Condition specific PROMs
| Group | Condition/ population | Name | Abbreviated | Country developed | Year validated | Short summary | Domains/dimensions | Self-report or other | Validation | Reference of the original validation papers | Licensing or restrictions on use? | Fees apply? | Weblink/Contact details for authors for licensing information | Published papers using the measure | Published reports using the measure | Other |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Blood and Metabolic - Cancer | Anaemia, cancer patients | Functional Assessment Of Cancer Therapy - Anemia | FACT-AN | USA | 1997 | A measure of specific quality of life concerns related to anaemia and fatigue in cancer patients. The FACT-An is composed of the FACT-G plus the Fatigue Subscale (these 2 elements forming the FACT-F), plus 7 additional miscellaneous non-fatigue items relevant to anaemia in cancer patients. | Unidimensional | Self-report | Internal consistency, test-retest reliability, and convergent and discriminant validity have been demonstrated. | Cella, D. (1997, July). The Functional Assessment of Cancer Therapy-Anemia (FACT-An) Scale: a new tool for the assessment of outcomes in cancer anemia and fatigue. In Seminars in hematology (Vol. 34, No. 3 Suppl 2, pp. 13-19). https://europepmc.org/abstract/med/9253779 | Yes | No | https://www.facit.org/FACITOrg/Questionnaires | Capozzi, L. C., McNeely, M. L., Lau, H. Y., Reimer, R. A., Giese‐Davis, J., Fung, T. S., & Culos‐Reed, S. N. (2016). Patient‐reported outcomes, body composition, and nutrition status in patients with head and neck cancer: Results from an exploratory randomized controlled exercise trial. Cancer, 122(8), 1185-1200. https://doi.org/10.1002/cncr.29863 | Comparative Effectiveness of Epoetin and Darbepoetin for Managing Anemia in Patients Undergoing Cancer Treatment (2006): https://effectivehealthcare.ahrq.gov/sites/default/files/pdf/cancer-ane… | The FACT-An scale has been translated into many languages (53 translations). |
| Blood and Metabolic | Anaemia, Fatigue, Chronic conditions | Functional Assessment Of Chronic Illness Therapy - Fatigue Scale | FACIT-Fatigue | USA | 1997 | A measure of specific quality of life concerns related to fatigue in cancer patients. The Fatigue specific module supplement the core questionnaire FACT-G and may be administered with the FACT-G (FACT-F) or without the FACT-G (FACIT-Fatigue). | Unidimensional | Self-report | Internal consistency, test-retest reliability, and convergent and discriminant validity have been demonstrated. | Yellen SB, Cella OF, Webster K, Blendowski C, Kaplan E. Measuring fatigue and other anemia-related symptoms with the Functional Assessment of Cancer Therapy (FACT) Measurement System. J Pain Symptom Manage 1997; 13:63-74. https://doi.org/10.1016/S0885-3924(96)00274-6 | Yes | No | https://www.facit.org/FACITOrg/Questionnaires | Cheville, A. L., Kollasch, J., Vandenberg, J., Shen, T., Grothey, A., Gamble, G., & Basford, J. R. (2013). A home-based exercise program to improve function, fatigue, and sleep quality in patients with Stage IV lung and colorectal cancer: a randomized controlled trial. Journal of pain and symptom management, 45(5), 811-821. https://doi.org/10.1016/j.jpainsymman.2012.05.006 | Epoetin and Darbepoetin for Managing Anemia in Patients Undergoing Cancer Treatment: Comparative Effectiveness Update (2013): https://effectivehealthcare.ahrq.gov/sites/default/files/related_files/… | The FACT-Fatigue scale has been translated into many languages (59 translations). |
| Cancer | Cancer - advanced | Edmonton Symptom Assessment System | ESAS | Canada | 1991 - Revised in 2011 | A symptom visual analogue scale developed for use in assessing the symptoms of patients receiving palliative care; initially developed for a cancer population with advanced disease. | 9: Anxiety, depression, drowsiness, lack of appetite, nausea, pain, shortness of breath, tiredness, and overall well-being | Self-report | Concurrent validity and construct validity have been demonstrated. | Bruera, E., Kuehn, N., Miller, M. J., Selmser, P., & Macmillan, K. (1991). The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. Journal of palliative care, 7(2), 6-9. doi: https://doi.org/10.1177/082585979100700202 | Yes | No | Contact information not available | Diplock, B. D., McGarragle, K. M., Mueller, W. A., Haddad, S., Ehrlich, R., Yoon, D. H. A., ... & Myers, J. (2019). The impact of automated screening with Edmonton Symptom Assessment System (ESAS) on health-related quality of life, supportive care needs, and patient satisfaction with care in 268 ambulatory cancer patients. Supportive Care in Cancer, 27(1), 209-218. doi: https://doi.org/10.1007/s00520-018-4304-0 | None identified in June 2019 | Adapted for use in several language including Thai and Brazilian. |
| Cancer | Cancer - advanced | Needs Assessment For Advanced Cancer Patients | NA-ACP | Australia | 2005 | A measure of the perceived needs of patients with advanced, incurable cancer. There is a specific version for advanced lung cancer patients (NA-ALCP). | 7: Medical communication/information, psychological/emotional, daily living, financial, symptom, spiritual, social | Self-report | Construct validity has been demonstrated. | Rainbird, K. J., Perkins, J. J., & Sanson‐Fisher, R. W. (2005). The Needs Assessment for Advanced Cancer Patients (NA‐ACP): a measure of the perceived needs of patients with advanced, incurable cancer. A study of validity, reliability and acceptability. Psycho‐Oncology: Journal of the Psychological, Social and Behavioral Dimensions of Cancer, 14(4), 297-306. https://doi.org/10.1002/pon.845 | Unknown | Unknown | Contact: R. J. Rainbird, rainbird@eftel.com | Rachakonda, K., George, M., Shafiei, M., & Oldmeadow, C. (2015). Unmet supportive Cancer care needs: an exploratory quantitative study in rural Australia. World journal of oncology, 6(4), 387. doi: https://dx.doi.org/10.14740%2Fwjon928w | None identified in June 2019 | |
| Cancer | Cancer - brain | Brain Metastases Symptom And Impact Questionnaire | BASIQ | Canada | 2012 | A measure of severity of brain metastases (BM) symptoms, and their impact on patients' activities of daily living and quality of life. The 18 item questionnaire includes both symptom and impacts scales. | 12: Headaches, dizziness, nausea, numbness, energy, balance, vision, memory, cognition, vision, physical activities and self-care | Self-report | Convergent and divergent validity, and factor analysis have been demonstrated. | Lasch, K. E., Ganguli, A., Bonthapally, V., Pompilus, F., Delbecque, L., Fitzgerald, K., & Ray, S. (2012). CN2 Development of a Patient-Reported Outcome Instrument in Brain Metastases: The Brain Metastases Symptom and Impact Questionniare (BASIQ). Value in Health, 15(4), A1. https://doi.org/10.1016/j.jval.2012.03.008 Thavarajah, N., Ray, S., Bedard, G., Zhang, L., Cella, D., Wong, E., ... & Soliman, H. (2015). Psychometric validation of the Brain Symptom and Impact Questionnaire (BASIQ) version 1.0 to assess quality of life in patients with brain metastases. CNS oncology, 4(1), 11-23. https://dx.doi.org/10.2217%2Fcns.14.49 |
Unknown | Unknown | Contact: Edward Chow, Edward.Chow@sunnybrook.ca | None identified in June 2019 | None identified in June 2019 | |
| Cancer | Cancer - breast | Body Image After Breast Cancer Questionnaire | BIBCQ (or BIABC) |
Canada | 2006 | A 53 item measure of the long term impact of breast cancer on body image. | 6: Vulnerability, body stigma, limitations, body concerns, transparency, and arm concerns | Self-report | Convergent validity has been demonstrated. | Baxter, N. N., Goodwin, P. J., Mcleod, R. S., Dion, R., Devins, G., & Bombardier, C. (2006). Reliability and validity of the body image after breast cancer questionnaire. The breast journal, 12(3), 221-232. https://doi.org/10.1111/j.1075-122X.2006.00246.x | Unknown | Unknown | Contact: Nancy Baxter, baxtern@smh.toronto.on.ca | Corica, T., Nowak, A. K., Saunders, C. M., Bulsara, M., Taylor, M., Vaidya, J. S., ... & Joseph, D. J. (2016). Cosmesis and breast-related quality of life outcomes after intraoperative radiation therapy for early breast cancer: a substudy of the TARGIT-A trial. International Journal of Radiation Oncology* Biology* Physics, 96(1), 55-64. https://doi.org/10.1016/j.ijrobp.2016.04.024 | None identified in June 2019 | |
| Cancer | Cancer - breast | Breast Cancer Chemotherapy Questionnaire | BCQ | Canada | 1988 | 30 item outcome measure specific for women with Stage 2 Breast Cancer adjuvant chemotherapy. | 7: Consequences of hair loss, emotional dysfunction, physical symptoms, trouble and inconvenience associated with treatment, fatigue, nausea, positive wellbeing | Self-report | Construct validity has been demonstrated. | Levine, M. N., Guyatt, G. H., Gent, M., De Pauw, S., Goodyear, M. D., Hryniuk, W. M., ... & Bramwell, V. H. (1988). Quality of life in stage II breast cancer: an instrument for clinical trials. Journal of Clinical Oncology, 6(12), 1798-1810. https://ascopubs.org/doi/pdf/10.1200/JCO.1988.6.12.1798 | Unknown | Unknown | Contact: Mark Levine, mlevine@mcmaster.ca | Dees, E. C., O'reilly, S., Goodman, S. N., Sartorius, S., Levine, M. A., Jones, R. J., ... & Fetting, J. H. (2000). A prospective pharmacologic evaluation of age-related toxicity of adjuvant chemotherapy in women with breast cancer. Cancer investigation, 18(6), 521-529. https://doi.org/10.3109/07357900009012191 | None identified in June 2019 | |
| Cancer | Cancer - breast | Breast Cancer Treatment Outcome Scale | BCTOS | USA | 2001 | A 22 item measure of women’s subjective evaluation of the aesthetic and functional outcome after breast cancer treatment. It examines the most important dimensions of after-treatment morbidity with respect to aesthetic and functional outcome. | 3: Functional status, cosmetic status and breast specific pain | Self-report | Factor analysis, predictive validity, and convergent validity have been demonstrated. | Stanton, A. L., Krishnan, L., & Collins, C. A. (2001). Form or function? Part 1. Subjective cosmetic and functional correlates of quality of life in women treated with breast‐conserving surgical procedures and radiotherapy. Cancer, 91(12), 2273-2281. https://doi.org/10.1002/1097-0142(20010615)91:12%3C2273::AID-CNCR1258%3… Krishnan, L., Stanton, A. L., Collins, C. A., Liston, V. E., & Jewell, W. R. (2001). Form or function? Part 2. Objective cosmetic and functional correlates of quality of life in women treated with breast‐conserving surgical procedures and radiotherapy. Cancer, 91(12), 2282-2287. https://doi.org/10.1002/1097-0142(20010615)91:12%3C2282::AID-CNCR1259%3… |
Unknown | Unknown | Contact: Annette L. Stanton, astanton@ukans.edu | Freedman, G. M., Anderson, P. R., Bleicher, R. J., Litwin, S., Li, T., Swaby, R. F., ... & Morrow, M. (2012). Five-year local control in a phase II study of hypofractionated intensity modulated radiation therapy with an incorporated boost for early stage breast cancer. International Journal of Radiation Oncology* Biology* Physics, 84(4), 888-893. https://dx.doi.org/10.1016%2Fj.ijrobp.2012.01.091 | None identified in June 2019 | Available in several languages including Portuguese and Dutch. |
| Cancer | Cancer - breast | BREAST-Q | BREAST-Q | USA and Canada | 2009 | BREAST-Q is a questionnaire measuring patient-reported outcomes of breast cancer patients in clinical research and practice. There are five BREAST-Q modules: Augmentation; Reduction/Mastopexy; Mastectomy; Reconstruction; Breast conserving therapy. Each module is comprised of multiple scales with varied number of items. | 6: Satisfaction with breasts, overall outcome, and process of care, and psychosocial, physical, and sexual well-being; 3 modules: Augmentation, reconstruction, and reduction | Self-report | Reliability, validity and responsiveness has been demonstrated with adequate validation across various papers. | Pusic, A. L., Klassen, A. F., Scott, A. M., Klok, J. A., Cordeiro, P. G., & Cano, S. J. (2009). Development of a new patient-reported outcome measure for breast surgery: the BREAST-Q. Plastic and reconstructive surgery, 124(2), 345-353. doi: 10.1097/PRS.0b013e3181aee807 | Yes | Yes, fees may apply | Contact: Andrea Pusic, pusica@mskcc.org | Eltahir, Y., Werners, L. L., Dreise, M. M., van Emmichoven, I. A. Z., Jansen, L., Werker, P. M., & de Bock, G. H. (2013). Quality-of-life outcomes between mastectomy alone and breast reconstruction: comparison of patient-reported BREAST-Q and other health-related quality-of-life measures. Plastic and reconstructive surgery, 132(2), 201e-209e. doi: 10.1097/PRS.0b013e31829586a7 | None identified in June 2019 | Adapted for use in several languages including: French, German, US Spanish, and UK English. |
| Cancer | Cancer - breast | Fear Of Physical Activity/Exercise Scale -Breast Cancer | FPAX-B | USA | 2011 | The FPAX-B measures the role of fear as a barrier to physical activity and exercise in survivors of breast cancer. | 3: Endurance, arm impairments, exercise education | Self-report | Exploratory factor analysis, and convergent and divergent validity have been demonstrated. | Sander, A. P., Elliot, L., Newsome, C., Roach, J., & Tasche, L. (2011). Development and content validation of a scale to measure fear of physical activity and exercise in the breast cancer population. Rehabilitation Oncology, 29(1), 17-22. https://search.proquest.com/docview/865651418?pq-origsite=gscholar ; Sander, A. P., Cuisinier, J., & Marchinski, C. M. (2014). Construct Validation of a Tool to Measure Fear of Physical Activity and Exercise in Survivors of Breast Cancer-the FPAX-B. Rehabilitation Oncology, 32(2), 21-28. https://search.proquest.com/docview/1542881188?pq-origsite=gscholar |
Unknown | Unknown | Contact: Antoinette P. Sander, t-sander@northwestern.edu | None identified in June 2019 | None identified in June 2019 | |
| Cancer | Cancer - breast | Hopwood Body Image Scale | HBIS | UK | 2001 | 10 item questionnaire designed for assessing body image changes in patients with cancer. The BIS includes 10 items that assess the affective (e.g., feeling self-conscious), behavioural (e.g., difficulty in looking at the naked body), and cognitive (e.g., satisfaction with appearance) aspects of body image in cancer patients. The questionnaire was designed to be used in all types of cancer or treatment. | Unidimensional | Self-report | Discriminant validity and factor analysis used for validation. | Hopwood, P., Fletcher, I., Lee, A., & Al Ghazal, S. (2001). A body image scale for use with cancer patients. European journal of cancer, 37(2), 189-197. https://doi.org/10.1016/S0959-8049(00)00353-1 | Unknown | Unknown | Contact: Dr P. Hopwood, penelope.hopwood@man.ac.uk | Przezdziecki, A., Sherman, K. A., Baillie, A., Taylor, A., Foley, E., & Stalgis‐Bilinski, K. (2013). My changed body: breast cancer, body image, distress and self‐compassion. Psycho‐oncology, 22(8), 1872-1879. https://doi.org/10.1002/pon.3230 | None identified in June 2019 | |
| Cancer | Cancer - breast | Kwan's Arm Problem Scale | KAPS | Norway | 2009 | 13 item self-rated scale for investigation of arm/shoulder problems in breast cancer survivors. | Unidimensional | Self-report | Factor analysis, convergent and discriminant validity have been demonstrated. | Kwan, W., Jackson, J., Weir, L. M., Dingee, C., McGregor, G., & Olivotto, I. A. (2002). Chronic arm morbidity after curative breast cancer treatment: prevalence and impact on quality of life. Journal of Clinical Oncology, 20(20), 4242-4248. doi: 10.1200/JCO.2002.09.018 http://www.ncbi.nlm.nih.gov/pubmed/?term=12377968 ; Nesvold, I. L., Fosså, S. D., Naume, B., & Dahl, A. A. (2009). Kwan’s arm problem scale: psychometric examination in a sample of stage II breast cancer survivors. Breast cancer research and treatment, 117(2), 281-288. https://link.springer.com/article/10.1007/s10549-008-0288-7 | Unknown | Unknown | Contact: Winkle Kwan, wkwan@bccancer.bc.ca | Johansen, S., Fosså, K., Nesvold, I. L., Malinen, E., & Fosså, S. D. (2014). Arm and shoulder morbidity following surgery and radiotherapy for breast cancer. Acta oncologica, 53(4), 521-529. https://doi.org/10.3109/0284186X.2014.880512 | None identified in June 2019 | |
| Cancer | Cancer - childhood cancer survivors | Quality Of Life – Cancer Survivors | QOL-CS | USA | 2001 | A 41 item visual analogue scale measuring quality of life in childhood cancer survivors. | 6: Visual analogue scale, physical well-being, psychological well-being (including distress and fears), social well-being, and spiritual well-being | Self-report | Factor analysis, concurrent and discriminant validity have been demonstrated. | Zebrack, B. J., & Chesler, M. A. (2001). A psychometric analysis of the Quality of Life-Cancer Survivors (QOL-CS) in survivors of childhood cancer. Quality of life research, 10(4), 319-329. https://link.springer.com/article/10.1023/A:1012228823115 | Unknown | Unknown | Contact: Brad Zebrack, bzebrack@mednet.ucla.edu | None identified in June 2019 | None identified in June 2019 | |
| Cancer | Cancer - general | Cancer Pain Inventory | CPI | USA | 2010 | The CPI measures cancer patients’ beliefs and concerns about pain. The scale comprises 19 items. | 5: Catastrophizing, interference, stoicism, social aspects, pain medication | Self-report | Principal component analysis and construct validity have been demonstrated. | Deshields, T. L., Tait, R. C., Manwaring, J., Trinkaus, K. M., Naughton, M., Hawkins, J., & Jeffe, D. B. (2010). The Cancer Pain Inventory: preliminary development and validation. Psycho‐Oncology, 19(7), 684-692. DOI: 10.1002/pon.1607 https://onlinelibrary.wiley.com/doi/pdf/10.1002/pon.1607 | Unknown | Unknown | Contact: Teresa Deshields, Teresadeshields1@gmail.com | None identified in June 2019 | None identified in June 2019 | |
| Cancer | Cancer - general | Cancer Rehabilitation Evaluation System-Short Form | CARES-SF | USA | 1991 | The CARES, initially called Cancer Inventory of Problem Situations (CIPS), was initially developed with not all items applicable to patients. The refined CARES-Short Form (CARES-SF) assesses the quality of life of cancer patients to document problems and concerns so that they might be addressed by professionals who treat these patients as part of comprehensive care. | 5: Physical, psychosocial, sexual, marital, medical interaction | Self-report | Concurrent validity has been demonstrated. | Schag, C. A. C., Ganz, P. A., & Heinrich, R. L. (1991). CAncer rehabilitation evaluation system–short form (CARES‐SF). A cancer specific rehabilitation and quality of life instrument. Cancer, 68(6), 1406-1413. https://doi.org/10.1002/1097-0142(19910915)68:6%3C1406::AID-CNCR2820680… | Unknown | Unknown | Contact: Anne Coscarelli, acoscarelli@mednet.ucla.edu | Khan, F., & Amatya, B. (2013). Factors associated with long-term functional outcomes, psychological sequelae and quality of life in persons after primary brain tumour. Journal of Neuro-oncology, 111(3), 355-366. https://doi.org/10.1007/s11060-012-1024-z | None identified in June 2019 | |
| Cancer | Cancer - general | European Organisation For Research And Treatment Of Cancer | EORTC QLQ-30 | Europe | 1993 | The EORTC is a core generic questionnaire associated with different disease-specific modules (e.g. lung cancer EORTC QLQ-LC13, prostate cancer EORTC QLQ-PR25, chemotherapy-induced peripheral neuropathy EORTC QLQ-CIPN). The questionnaire assesses the quality of life of cancer patients. | 9: 5 functional (physical, role, cognitive, emotional, and social), 3 symptom (fatigue, pain, and nausea and vomiting), and a global health and quality-of-life scale. | Self-report | Reliability, validity and responsiveness has been demonstrated with adequate validation across various papers. | Aaronson, N. K., Ahmedzai, S., Bergman, B., Bullinger, M., Cull, A., Duez, N. J., ... & Kaasa, S. (1993). The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. JNCI: Journal of the National Cancer Institute, 85(5), 365-376. https://doi.org/10.1093/jnci/85.5.365 | Yes | Yes, fees may apply | https://qol.eortc.org/ | Bjordal, K., De Graeff, A., Fayers, P. M., Hammerlid, E., van Pottelsberghe, C., Curran, D., ... & Söderholm, A. L. (2000). A 12 country field study of the EORTC QLQ-C30 (version 3.0) and the head and neck cancer specific module (EORTC QLQ-H&N35) in head and neck patients. European journal of cancer, 36(14), 1796-1807. https://doi.org/10.1016/S0959-8049(00)00186-6 | None identified in June 2019 | It has been translated and validated into over 100 languages and is used each year in more than 5000 studies worldwide. |
| Cancer | Cancer - general | Functional Assessment Of Cancer Therapy Scale - General | FACT-G | USA | 1993 | FACT is an assessment of quality of life for patients receiving cancer treatment. It can be used with patients of any tumour type and supplemented by specific modules addressing relevant disease-, treatment-, or condition-related issues not already covered in the general questionnaire. | 5: Physical wellbeing, social/family wellbeing, relationship with the physician, emotional wellbeing, functional wellbeing | Self-report | Reliability, validity and responsiveness has been demonstrated with adequate validation across various papers. | Cella, D. F., Tulsky, D. S., Gray, G., Sarafian, B., Linn, E., Bonomi, A., ... & Eckberg, K. (1993). The Functional Assessment of Cancer Therapy scale: development and validation of the general measure. J Clin Oncol, 11(3), 570-579. https://www.researchgate.net/profile/David_Cella/publication/14754744_C… | Yes | No | https://www.facit.org/FACITOrg/Questionnaires | Dockham, B., Schafenacker, A., Yoon, H., Ronis, D. L., Kershaw, T., Titler, M., & Northouse, L. (2016). Implementation of a psychoeducational program for cancer survivors and family caregivers at a cancer support community affiliate: a pilot effectiveness study. Cancer nursing, 39(3), 169-180. doi: 10.1097/NCC.0000000000000311 | None identified in June 2019 | Translations are not available on the website and may require a fee depending on the details of your study. |
| Cancer | Cancer - general | Functional Living Index-Cancer | FLIC | Canada | 1984 | A measure of the effect of the symptoms of cancer and its treatment on functional ability in all areas of life. FLIC is also available in a short form (11 item Quick-FLIC). | 5: Gastrointestinal symptoms, General health, physical functioning, social functioning, mental functioning | Self-report | Factor analysis, concurrent validity, and construct validity have been demonstrated. | Schipper, H., Clinch, J., McMurray, A., & Levitt, M. (1984). Measuring the quality of life of cancer patients: the Functional Living Index-Cancer: development and validation. Journal of clinical Oncology, 2(5), 472-483. https://ascopubs.org/doi/abs/10.1200/JCO.1984.2.5.472 | No | No | Contact: H. Schipper | Colby, D. A., & Shifren, K. (2013). Optimism, mental health, and quality of life: a study among breast cancer patients. Psychology, health & medicine, 18(1), 10-20. https://doi.org/10.1080/13548506.2012.686619 | None identified in June 2019 | |
| Cancer | Cancer - general | Location-Based Assessment Of Sensory Symptoms In Cancer | L-BASIC | USA | 2009 | Four item scale of uses location-specific ratings of sensory symptoms. It is structured such that patients provide a numeric score and an adjectival description for any sensory symptoms, including both pain and neuropathic sensations, present in each of 10 predefined body areas. | Unidimensional: Sensory symptoms | Self-report | Criterion validity and construct validity have been demonstrated. | Burkey, A. R., & Kanetsky, P. A. (2009). Development of a novel location-based assessment of sensory symptoms in cancer patients: preliminary reliability and validity assessment. Journal of pain and symptom management, 37(5), 848-862. https://doi.org/10.1016/j.jpainsymman.2008.05.013 | Unknown | Unknown | Contact: Adam R. Burkey, burkeya@uphs.upenn.edu | None identified in June 2019 | None identified in June 2019 | |
| Cancer | Cancer - general | M. D. Anderson Symptom Inventory | MDASI | USA | 2000 | A quick to complete instrument, it measures patients' symptom distress or burden in cancer, includes a range of different symptoms some part of the "core set". There are additional modules for, e.g., head and neck cancer, specifically. | 2: Symptom severity, symptom interference | Self-report | Principal axis factoring and internal consistency have been demonstrated. | Cleeland, C. S., Mendoza, T. R., Wang, X. S., Chou, C., Harle, M. T., Morrissey, M., & Engstrom, M. C. (2000). Assessing symptom distress in cancer patients: the MD Anderson Symptom Inventory. Cancer: Interdisciplinary International Journal of the American Cancer Society, 89(7), 1634-1646. https://doi.org/10.1002/1097-0142(20001001)89:7<1634::AID-CNCR29>3.0.CO…` | Yes | Yes, fees may apply | https://www.mdanderson.org/research/departments-labs-institutes/departm… | Fisch, M. J., Lee, J. W., Weiss, M., Wagner, L. I., Chang, V. T., Cella, D., ... & Cleeland, C. S. (2012). Prospective, observational study of pain and analgesic prescribing in medical oncology outpatients with breast, colorectal, lung, or prostate cancer. Journal of Clinical Oncology, 30(16), 1980. doi: 10.1200/JCO.2011.39.2381 | Recommendations for Incorporating Patient-Reported Outcomes (PROs) into Clinical Comparative Effectiveness Research (CER) in Adult Oncology (2012): http://www.cmtpnet.org/docs/resources/PRO_EGD.pdf | Available in multiple other languages. |
| Cancer | Cancer - general | Patient Reported Outcome Version Of Common-Terminology-Criteria-For-Adverse-Events | PRO-CTCAE | USA | 2014 | A patient-reported outcome measure of symptomatic toxicity in patients on cancer clinical trials. It was designed to be used as a companion to the Common Terminology Criteria for Adverse Events (CTCAE), the standard lexicon for adverse event reporting in cancer trials. The PRO-CTCAE includes an item library of 124 items representing 78 symptomatic toxicities drawn from the CTCAE . https://healthcaredelivery.cancer.gov/pro-ctcae/item-library.pdf |
Unidimensional | Self-report | Construct validity has been demonstrated. | Basch, E., Reeve, B. B., Mitchell, S. A., Clauser, S. B., Minasian, L. M., Dueck, A. C., ... & Bruner, D. W. (2014). Development of the National Cancer Institute’s patient-reported outcomes version of the common terminology criteria for adverse events (PRO-CTCAE). Journal of the National Cancer Institute, 106(9), dju244. https://doi.org/10.1093/jnci/dju244 Dueck, A. C., Mendoza, T. R., Mitchell, S. A., Reeve, B. B., Castro, K. M., Rogak, L. J., ... & Li, Y. (2015). Validity and reliability of the US National Cancer Institute’s patient-reported outcomes version of the common terminology criteria for adverse events (PRO-CTCAE). JAMA oncology, 1(8), 1051-1059. https://jamanetwork.com/journals/jamaoncology/article-abstract/2425835 |
Yes | No | https://healthcaredelivery.cancer.gov/pro-ctcae/overview.html | Friese, C. R., Harrison, J. M., Janz, N. K., Jagsi, R., Morrow, M., Li, Y., ... & Hofer, T. P. (2017). Treatment‐associated toxicities reported by patients with early‐stage invasive breast cancer. Cancer, 123(11), 1925-1934. https://onlinelibrary.wiley.com/doi/pdf/10.1002/cncr.30547 | None identified in June 2019 | Translated into various languages. |
| Cancer | Cancer - general | Rotterdam Symptom Checklist | RSCL | The Netherlands | 1990 | A cancer-specific tool to measure psychological and physical distress in cancer patients participating in clinical research. Validation in various cancer populations. Originally validated in Dutch but subsequently in English. | 3: Physical symptoms, psychological symptoms, activities of daily living | Self-report | Factor analysis was used for validation. | De Haes, J. C. J. M., Van Knippenberg, F. C. E., & Neijt, J. P. (1990). Measuring psychological and physical distress in cancer patients: structure and application of the Rotterdam Symptom Checklist. British journal of cancer, 62(6), 1034. https://doi.org/10.1038/bjc.1990.434 | Yes | Yes, fees may apply | Contact: Johanna C.J.M. de Haes, e.m.verkoosen@amc.uva.nl | Matzka, M., Mayer, H., Köck-Hódi, S., Moses-Passini, C., Dubey, C., Jahn, P., ... & Eicher, M. (2016). Relationship between resilience, psychological distress and physical activity in cancer patients: A cross-sectional observation study. PloS one, 11(4), e0154496. https://doi.org/10.1371/journal.pone.0154496 | None identified in June 2019 | |
| Cancer | Cancer - general | Treatment-Induced Peripheral Neuropathy Scale | TNAS | USA | 2015 | Assessing the severity and course of neuropathy across various cancer treatments. | Unidimensional | Self-report | Criterion validity has been demonstrated. | Mendoza, T. R., Wang, X. S., Williams, L. A., Shi, Q., Vichaya, E. G., Dougherty, P. M., ... & Cleeland, C. S. (2015). Measuring therapy-induced peripheral neuropathy: preliminary development and validation of the treatment-induced neuropathy assessment scale. The Journal of Pain, 16(10), 1032-1043. https://doi.org/10.1016/j.jpain.2015.07.002 | Unknown | Unknown | Contact: Tito R. Mendoz, tmendoza@mdanderson.org | None identified in June 2019 | None identified in June 2019 | |
| Cancer | Cancer - long term cancer survivors | Impact Of Cancer Scale | IOC v2 | USA | 2008 | The IOCv2 is a refinement of the original 81 item IOC scale developed by Zebrack and colleagues (2006, 2008). The measure assesses the impact of cancer on the quality of life and other aspects of long-term cancer survivors. | 2 higher-order domains and several subscales: positive impact summary scale with four subscales (altruism and empathy, health awareness, meaning of cancer, and positive self-evaluation), a negative impact summary scale with four subscales (appearance concerns, body change concerns, life interferences, and worry), and subscales for employment and relationship concerns | Self-report | Exploratory factor analysis, construct validity, and concurrent validity have been demonstrated. | Crespi, C. M., Ganz, P. A., Petersen, L., Castillo, A., & Caan, B. (2008). Refinement and psychometric evaluation of the impact of cancer scale. JNCI: Journal of the National Cancer Institute, 100(21), 1530-1541. https://doi-org.simsrad.net.ocs.mq.edu.au/10.1093/jnci/djn340 | Unknown | Unknown | Contact: Catherine M. Crespi, ccrespi@ucla.edu | Rock, C. L., Byers, T. E., Colditz, G. A., Demark-Wahnefried, W., Ganz, P. A., Wolin, K. Y., ... & Pakiz, B. (2013). Reducing breast cancer recurrence with weight loss, a vanguard trial: the Exercise and Nutrition to Enhance Recovery and Good Health for You (ENERGY) Trial. Contemporary clinical trials, 34(2), 282-295. https://dx.doi.org/10.1016%2Fj.cct.2012.12.003 | None identified in June 2019 | |
| Cancer | Cancer - long-term survivors | Quality Of Life In Adult Cancer Survivors | QLACS | USA | 2005 | The QLACS is a measure specifically focusing on the quality of life of long-term cancer survivors. | 5: Cancer-specific domains were identified (appearance concerns, financial problems, distress over recurrence, family-related distress, and benefits of cancer); 7: Generic quality of life domains (negative feelings, positive feelings, cognitive problems, sexual problems, physical pain, fatigue, and social avoidance) | Self-report | Factor analysis and criterion-related validity have been demonstrated. | Avis, N. E., Smith, K. W., McGraw, S., Smith, R. G., Petronis, V. M., & Carver, C. S. (2005). Assessing quality of life in adult cancer survivors (QLACS). Quality of life research, 14(4), 1007-1023. doi: 10.1007/s11136-004-2147-2 https://link.springer.com/content/pdf/10.1007/s11136-004-2147-2.pdf | Unknown | Unknown | Contact: Nancy Avis, navis@wfubmc.edu | Foster, C., Breckons, M., Cotterell, P., Barbosa, D., Calman, L., Corner, J., ... & Smith, P. W. (2015). Cancer survivors’ self-efficacy to self-manage in the year following primary treatment. Journal of Cancer Survivorship, 9(1), 11-19. doi: 10.1007/s11764-014-0384-0 https://link.springer.com/content/pdf/10.1007%2Fs11764-014-0384-0.pdf | None identified in June 2019 | |
| Cancer | Cancer - lung | Cataldo Lung Cancer Stigma Scale | CLCSS | USA | 2011 | A 31 item measure of self-perceived stigma and shame among lung cancer patients. | 4: Stigma and shame, social isolation, discrimination, and smoking | Self-report | Construct validity, criterion-related validity, and exploratory factor analysis have been demonstrated. | Cataldo, J. K., Slaughter, R., Jahan, T. M., Pongquan, V. L., & Hwang, W. J. (2011, January). Measuring stigma in people with lung cancer: psychometric testing of the cataldo lung cancer stigma scale. In Oncology nursing forum (Vol. 38, No. 1, p. E46). NIH Public Access. https://dx.doi.org/10.1188%2F11.ONF.E46-E54 | Unknown | Unknown | Contact: Janine Cataldo, janine.cataldo@nursing.ucsf.edu | Cataldo, J. K., Jahan, T. M., & Pongquan, V. L. (2012). Lung cancer stigma, depression, and quality of life among ever and never smokers. European Journal of Oncology Nursing, 16(3), 264-269. https://dx.doi.org/10.1016%2Fj.ejon.2011.06.008 | None identified in June 2019 | |
| Cancer | Cancer - lung | Lung Cancer Stigma Inventory | LCSI | USA | 2017 | 25 item scale of stigma in patients diagnosed with lung cancer. | 3: Perceived stigma, internalized stigma, and constrained disclosure | Self-report | Exploratory factor analysis and convergent validity used for validation. | Hamann, H. A., Shen, M. J., Thomas, A. J., Lee, S. J. C., & Ostroff, J. S. (2017). Development and preliminary psychometric evaluation of a patient-reported outcome measure for lung cancer stigma: The Lung Cancer Stigma Inventory (LCSI). https://psycnet.apa.org/doi/10.1037/sah0000089 | Unknown | Unknown | Contact: Heidi A. Hamann, heidihamann@email.arizona.edu | None identified in June 2019 | None identified in June 2019 | |
| Cancer | Cancer - lung | Lung Cancer Symptom Scale | LCSS | USA and Canada | 1994 | A measure of health related quality of life with emphasis on assessment of degree of palliation and lung cancer symptom control in patients receiving treatment for the malignancy or participating in clinical trials. The original LCSS was developed in 1985 at Memorial Sloan-Kettering Cancer Center, but validation information is obtained from articles published in 1993 and 1994. The observer scale is optional and serves to provide to provide context to the subjective perceptions of the patient. If the observer form is not used, then it is important to have obtained such data using another form (e.g., type of pain medication). | 4: Symptoms, total symptomatic distress, activity status, overall quality of life | Self-report | Construct validity and criterion-related validity have been demonstrated. | Hollen, P. J., Gralla, R. J., Kris, M. G., & Potanovich, L. M. (1993). Quality of life assessment in individuals with lung cancer: testing the Lung Cancer Symptom Scale (LCSS). European Journal of Cancer, 29, S51-S58. https://global-factiva-com.simsrad.net.ocs.mq.edu.au/ga/default.aspx ; Hollen, P. J., Gralla, R. J., Kris, M. G., Cox, C., Belani, C. P., Grunberg, S. M., ... & Neidhart, J. A. (1994). Measurement of quality of life in patients with lung cancer in multicenter trials of new therapies. Psychometric assessment of the Lung Cancer Symptom Scale. Cancer, 73(8), 2087-2098. https://doi.org/10.1002/1097-0142(19940415)73:8%3C2087::AID-CNCR2820730… |
Yes | No | Contact: Patricia J. Hollen, phollen@lynx.dac.neu.edu | Yorke, J., Lloyd-Williams, M., Smith, J., Blackhall, F., Harle, A., Warden, J., ... & Molassiotis, A. (2015). Management of the respiratory distress symptom cluster in lung cancer: a randomised controlled feasibility trial. Supportive care in cancer, 23(11), 3373-3384. https://link.springer.com/article/10.1007/s00520-015-2810-x | None identified in June 2019 | Available in many languages including: English, French, Spanish, Dutch/Flemish, Finnish, German, Italian, Polish, Portuguese |
| Cancer | Cancer - pancreatic | Pancreatic Cancer Disease Impact | PACADI | Norway | 2013 | An 8 item disease-specific, patient-reported outcome measure of pancreatic cancer. Items are focussed around physical domains. | 8: Pain/discomfort, fatigue, anxiety, bowel and/or digestive problems, loss of appetite, dry mouth, itchiness, nausea | Self-report | Construct validity has been demonstrated. | Heiberg, T., Nordby, T., Kvien, T. K., & Buanes, T. (2013). Development and preliminary validation of the pancreatic cancer disease impact score. Supportive Care in Cancer, 21(6), 1677-1684. http://dx.doi.org/10.1007/s00520-012-1713-3 | Unknown | Unknown | Contact: Turid Heiberg, Turid.Heiberg@ldh.no | None identified in June 2019 | None identified in June 2019 | |
| Cancer | Cancer - patients receiving chemotherapy | Comprehensive Score For Financial Toxicity | COST | USA | 2017 | An 11 item PROM to assess financial toxicity in patients with cancer. | Unidimensional: Financial toxicity | Self-report | Factor analysis, and convergent and divergent validity have been demonstrated. | De Souza, J. A., Yap, B. J., Hlubocky, F. J., Wroblewski, K., Ratain, M. J., Cella, D., & Daugherty, C. K. (2014). The development of a financial toxicity patient‐reported outcome in cancer: the COST measure. Cancer, 120(20), 3245-3253. https://doi.org/10.1002/cncr.28814; de Souza, J. A., Yap, B. J., Wroblewski, K., Blinder, V., Araújo, F. S., Hlubocky, F. J., ... & Daugherty, C. K. (2017). Measuring financial toxicity as a clinically relevant patient‐reported outcome: the validation of the COmprehensive Score for financial Toxicity (COST). Cancer, 123(3), 476-484. https://doi.org/10.1002/cncr.30369 | Unknown | Unknown | Contact: Jonas A. de Souza, jdesouza@medicine.bsd.uchicago.edu | Kelly, E. P., Hyer, J. M., Onuma, A. E., Paredes, A. Z., Tsilimigras, D. I., & Pawlik, T. M. (2019). Identifying subgroups of well‐being among patients with cancer: Differences in attitudes and preferences around surveillance after curative‐intent surgery. Journal of surgical oncology. https://doi.org/10.1002/jso.25507 | None identified in June 2019 | |
| Cancer | Cancer - prostate | Expanded Prostate Index Composite | EPIC | USA | 2000 | A measure of comprehensive assessment of health-related quality of life in men with prostate cancer. Based on the University of California-Los Angeles Prostate Cancer Index (UCLA-PCI). | 4: Urinary, bowel, sexual, hormonal | Self-report | Criterion validity has been demonstrated. | Wei, J. T., Dunn, R. L., Litwin, M. S., Sandler, H. M., & Sanda, M. G. (2000). Development and validation of the expanded prostate cancer index composite (EPIC) for comprehensive assessment of health-related quality of life in men with prostate cancer. Urology, 56(6), 899-905. https://doi.org/10.1016/S0090-4295(00)00858-X | Unknown | Unknown | Contact: Martin G Sanda, martinsanda@emory.edu | Miwa, S., Mizokami, A., Konaka, H., Ueno, S., Kitagawa, Y., Koh, E., & Namiki, M. (2013). Prospective longitudinal comparative study of health-related quality of life and treatment satisfaction in patients treated with hormone therapy, radical retropubic prostatectomy, and high or low dose rate brachytherapy for prostate cancer. Prostate international, 1(3), 117-124. https://doi.org/10.12954/PI.13021 | None identified in June 2019 | Available in seven translations. |
| Cancer | Cancer caregivers | Caregiver Quality Of Life Index—Cancer | CQOLC | USA | 1999 | A 35 item measure of quality of life of the family caregiver of patients with cancer. For example, the physical, social, emotion, and financial aspects of well-being and functioning for carers of cancer patients. | 4: Burden, disruptiveness, positive adaptation, and financial concerns | Self-report | Construct validity has been demonstrated. | Weitzner, M. A., Jacobsen, P. B., Wagner, H., Friedland, J., & Cox, C. (1999). The Caregiver Quality of Life Index–Cancer (CQOLC) scale: development and validation of an instrument to measure quality of life of the family caregiver of patients with cancer. Quality of Life Research, 8(1-2), 55-63. https://link.springer.com/content/pdf/10.1023/A:1026407010614.pdf | Unknown | Unknown | Contact: M. A. Weitzner, weitznma@moffitt.usf.edu | Wadhwa, D., Burman, D., Swami, N., Rodin, G., Lo, C., & Zimmermann, C. (2013). Quality of life and mental health in caregivers of outpatients with advanced cancer. Psycho‐Oncology, 22(2), 403-410. https://doi.org/10.1002/pon.2104 | None identified in June 2019 | |
| Cancer | Cancer support services | Measure Yourself Concerns And Wellbeing | MYCaW | UK | 2007 | MYCaW is an adaptation of Measure Yourself Medical Outcome Profile (MYMOP) developed in 1996. MYCaW is a patient-centred questionnaire that allows cancer patients to identify and quantify the severity of their “concerns” and “wellbeing,” as opposed to using a predetermined list. | 2: Concerns, wellbeing | Self-report | Content validity, convergent validity, and responsiveness to change have been demonstrated. | Jolliffe, R., Seers, H., Jackson, S., Caro, E., Weeks, L., & Polley, M. J. (2015). The responsiveness, content validity, and convergent validity of the measure Yourself concerns and wellbeing (MYCaW) patient-reported outcome measure. Integrative cancer therapies, 14(1), 26-34. https://doi.org/10.1177/1534735414555809 | Unknown | Unknown | Contact: c.paterson@bristol.ac.uk | Kapila, A. K., Herd, A., Knife, N., Chaplin, P., & Patel, A. (2019). A Prospective Cohort Study on the Impact of Reflexology in Patients With Breast Cancer Using the MYCaW Scale. Clinical breast cancer, 19(2), e319-e326. https://doi.org/10.1016/j.clbc.2018.12.007 | None identified in June 2019 | |
| Cancer - Mental health | Cancer - Prostate, Mental health - Anxiety | Memorial Scale For Anxiety In Prostate Cancer | MAX-PC | USA | 2003 | This measure facilitates the identification and assessment of men with prostate cancer-related anxiety. | 3: Prostate cancer anxiety, anxiety related to prostate specific antigen, fear of recurrence | Self-report | Concurrent validity has been demonstrated. | Roth, A. J., Rosenfeld, B., Kornblith, A. B., Gibson, C., Scher, H. I., Curley‐Smart, T., ... & Breitbart, W. (2003). The memorial anxiety scale for prostate cancer: validation of a new scale to measure anxiety in men with prostate cancer. Cancer: Interdisciplinary International Journal of the American Cancer Society, 97(11), 2910-2918. https://doi.org/10.1002/cncr.11386 | Unknown | Unknown | Contact: Andrew Roth, rotha@mskcc.org | Chambers, S. K., Foley, E., Galt, E., Ferguson, M., & Clutton, S. (2012). Mindfulness groups for men with advanced prostate cancer: a pilot study to assess feasibility and effectiveness and the role of peer support. Supportive Care in Cancer, 20(6), 1183-1192. doi: 10.1007/s00520-011-1195-8 https://link.springer.com/content/pdf/10.1007%2Fs00520-011-1195-8.pdf |
None identified in June 2019 | |
| Cancer - Mental health | Depression in geriatric, cancer and geriatric cancer patients | Zung Self-Rating Depression Scale | SDS | USA | 1965 | A measure of depression in patients with depressive disorder. | Unidimensional | Self-report | Reliability and validity have been demonstrated. | Zung, W. W. (1965). A self-rating depression scale. Archives of general psychiatry, 12(1), 63-70. doi:10.1001/archpsyc.1965.01720310065008 Biggs, J. T., Wylie, L. T., & Ziegler, V. E. (1978). Validity of the Zung self-rating depression scale. The British Journal of Psychiatry, 132(4), 381-385. https://doi.org/10.1192/bjp.132.4.381 | Yes | No | https://psychology-tools.com/test/zung-depression-scale | Bose, M., & Shah, P. (2012). Analysing Post Stroke Depression (PSD) Levels in Stroke Patients Using Zung Self-Rating Depression Scale. Indian Journal of Physiotherapy & Occupational Therapy, 6(4). https://eds.a.ebscohost.com/abstract?site=eds&scope=site&jrnl=09735666&… | None identified in June 2019 | The Zung Self-Rating Depression Scale has been translated into many languages, including Arabic, Azerbaijani, Dutch, German, Portuguese, and Spanish. |
| Cardiovascular | Acute myocardial infarction | Macnew Heart Disease Questionnaire | MacNew | Australia | 1996 | A measure of health-related quality of life in patients with heart diseases. A modification of the original QLMI (Quality of Life after Myocardial Infarction). | 3: Emotional, physical, social | Self-report | Construct validity has been demonstrated. | Valenti, L., Lim, L., Heller, R. F., & Knapp, J. (1996). An improved questionnaire for assessing quality of life after acute myocardial infarction. Quality of Life Research, 5(1), 151-161. https://link.springer.com/article/10.1007/BF00435980 | Yes | Yes, fees may apply | http://www.macnew.org/wp/ info@macnew.org |
Peixoto, T. C., Begot, I., Bolzan, D. W., Machado, L., Reis, M. S., Papa, V., ... & Guizilini, S. (2015). Early exercise-based rehabilitation improves health-related quality of life and functional capacity after acute myocardial infarction: a randomized controlled trial. Canadian Journal of Cardiology, 31(3), 308-313. https://doi.org/10.1016/j.cjca.2014.11.014 | None identified in June 2019 | The MacNew has been validated in Chinese, Dutch, English, Farsi, German, Portuguese and Spanish patients with myocardial infarction and in Chinese, English, Dutch, German and Turkish in patients with angina and Dutch and Portuguese in patients with acute coronary syndrome. It also has been validated in Chinese, Dutch, English and German in patients with heart failure. and in German in patients with a pacemaker. |
| Cardiovascular | Anticoagulation therapy in patients with atrial fibrillation | Duke Anticoagulation Satisfaction Scale | DASS | USA | 2004 | A 25 item measure of quality of life and satisfaction with among patients with anticoagulation. | 1: Negative impacts of anticoagulation (limitations, hassles and burdens), and (2) positive impacts of anticoagulation (confidence, reassurance, satisfaction) | Self-report | Factor analysis and concurrent validity have been demonstrated. | Samsa, G., Matchar, D. B., Dolor, R. J., Wiklund, I., Hedner, E., Wygant, G., ... & Edwards, R. (2004). A new instrument for measuring anticoagulation-related quality of life: development and preliminary validation. Health and quality of life outcomes, 2(1), 22. https://doi.org/10.1186/1477-7525-2-22 | Unknown | Unknown | Contact: Greg Samsa, samsa001@mc.duke.edu | Esra Yildiz PhD, R. N., & Nuray Dayapoglu PhD, R. N. (2017). The Satisfaction Levels of Patients Using Anticoagulants. International Journal of Caring Sciences, 10(1), 568. http://www.internationaljournalofcaringsciences.org/docs/60_yildiz_orig… | None identified in June 2019 | |
| Cardiovascular | Atrial fibrillation | Anti-Clot Treatment Scale | ACTS | UK | 2012 | A patient treatment satisfaction measure for patients with anticoagulation treatment. It includes a 12 item ACTS Burdens scale and a 3 item ACTS Benefits scale. Development based on the Duke Anticoagulation Satisfaction Scale (DASS). | 2: Burdens, benefits | Self-report | Known group and discriminant validity have been demonstrated. | Cano, S. J., Lamping, D. L., Bamber, L., & Smith, S. (2012). The Anti-Clot Treatment Scale (ACTS) in clinical trials: cross-cultural validation in venous thromboembolism patients. Health and quality of life outcomes, 10(1), 120. https://doi.org/10.1186/1477-7525-10-120 | Yes | Yes, fees may apply | Contact: Stefan J. Cano, stefan.cano@pcmd.ac.uk - https://cvoutcomes.org/faqs/3030#3162 | Prins, M. H., Bamber, L., Cano, S. J., Wang, M. Y., Erkens, P., Bauersachs, R., & Lensing, A. W. (2015). Patient-reported treatment satisfaction with oral rivaroxaban versus standard therapy in the treatment of pulmonary embolism; results from the EINSTEIN PE trial. Thrombosis research, 135(2), 281-288. https://doi.org/10.1016/j.thromres.2014.11.008 | None identified in June 2019 | Also available in French, Dutch, Italian, German. |
| Cardiovascular | Atrial fibrillation | Atrial Fibrillation Impact Questionnaire | AFImpact | USA | 2017 | An 18 item measure of patient-reported impact of atrial fibrillation. | 3: Vitality, emotional distress, sleep | Self-report | Construct validity, discriminant validity, and factor analysis have been demonstrated. | Coyne, K. S., Edvardsson, N., & Rydén, A. (2017). Development and Validation of the AFImpact: An Atrial Fibrillation–Specific Measure of Patient-Reported Health-Related Quality of Life. Value in Health, 20(10), 1355-1361. https://doi.org/10.1016/j.jval.2017.06.005 | Unknown | Unknown | Contact: Karin S. Coyne, anna.ryden@astrazeneca.com | None identified in June 2019 | None identified in June 2019 | |
| Cardiovascular | Coronary artery disease | Seattle Angina Questionnaire | SAQ | USA | 1995 | A measure to quantify the physical and emotional effects of coronary artery disease. Such as the frequency of and recent changes in their symptoms, their satisfaction with treatment, and the degree to which they perceive their disease to affect their quality of life. The original version has 19 items, but a short 7 item version also exists. | 5: Physical limitation, angina stability, anginal frequency, treatment satisfaction, disease perception | Self-report | Concurrent validity has been demonstrated. | Spertus, J. A., Winder, J. A., Dewhurst, T. A., Deyo, R. A., Prodzinski, J., McDonnell, M., & Fihn, S. D. (1995). Development and evaluation of the Seattle Angina Questionnaire: a new functional status measure for coronary artery disease. Journal of the American College of Cardiology, 25(2), 333-341. http://www.onlinejacc.org/content/accj/25/2/333.full.pdf | Yes | Yes, fees may apply | https://cvoutcomes.org/faqs/3030#3162 | Serruys, P. W., Chevalier, B., Sotomi, Y., Cequier, A., Carrié, D., Piek, J. J., ... & Helqvist, S. (2016). Comparison of an everolimus-eluting bioresorbable scaffold with an everolimus-eluting metallic stent for the treatment of coronary artery stenosis (ABSORB II): a 3 year, randomised, controlled, single-blind, multicentre clinical trial. The Lancet, 388(10059), 2479-2491. https://doi.org/10.1016/S0140-6736(16)32050-5 | None identified in June 2019 | |
| Cardiovascular | Heart failure | Chronic Heart Failure Assessment Tool | CHAT | UK | 2008 | A measure of health-related quality of life in heart failure from the patient perspective. | 4: Symptoms, activity levels, psychosocial aspects, emotions | Self-report | Criterion validity and factor analysis have been demonstrated. | Dunderdale, K., Thompson, D. R., Beer, S. F., Furze, G., & Miles, J. N. (2008). Development and validation of a patient-centered health-related quality-of-life measure: the Chronic Heart Failure Assessment Tool. Journal of Cardiovascular Nursing, 23(4), 364-370. doi: 10.1097/01.JCN.0000317439.82704.e8 | Unknown | Unknown | Contact: Karen Dunderdale, karen.dunderdale@nlg.nhs.uk | None identified in June 2019 | None identified in June 2019 | |
| Cardiovascular | Heart failure | Chronic Heart Failure Questionnaire | CHFQ or CHQ | Canada | 1989 | A tool for measuring longitudinal change over time within persons with heart failure. Available in three formats: 1- CHQ Original; 2- Self-Administered Standardized Format (CHQ-SAS); 3- Self-Administered Individualized Format (CHQ-SAI). | 3: Dyspnoea, fatigue, emotional | Interviewer administered | Internal consistency, test-retest reproducibility, and validity have been demonstrated. | Guyatt, G. H., Nogradi, S., Halcrow, S., Singer, J., Sullivan, M. J., & Fallen, E. L. (1989). Development and testing of a new measure of health status for clinical trials in heart failure. Journal of General Internal Medicine, 4(2), 101-107. https://link.springer.com/content/pdf/10.1007/BF02602348.pdf | Yes | Yes, fees may apply | http://milo.mcmaster.ca/questionnaires/questionnaires | Wall, H. K., Ballard, J., Troped, P., Njike, V. Y., & Katz, D. L. (2010). Impact of home-based, supervised exercise on congestive heart failure. International journal of cardiology, 145(2), 267-270. https://doi.org/10.1016/j.ijcard.2009.09.478 | None identified in June 2019 | |
| Cardiovascular | Heart failure | European Heart Failure Self-Care Behaviour Scale | EHFScBs | The Netherlands, Sweden and Italy | 2003 | A scale measuring the behaviour that heart failure patients perform to maintain life, healthy functioning, and well-being. A revised, 9 item scale now exists (EHFScBs-9). | Unidimensional | Self-report | Factor analysis and concurrent validity have been demonstrated. | Jaarsma, T., Strömberg, A., Mårtensson, J., & Dracup, K. (2003). Development and testing of the European heart failure self‐care behaviour scale. European Journal of Heart Failure, 5(3), 363-370. https://doi.org/10.1016/S1388-9842(02)00253-2 | Unknown | Unknown | Contact: T. Jaarsma, t.jaarsma@thorax.azg.nl | Jaarsma, T., Strömberg, A., Gal, T. B., Cameron, J., Driscoll, A., Duengen, H. D., ... & Köberich, S. (2013). Comparison of self-care behaviors of heart failure patients in 15 countries worldwide. Patient education and counseling, 92(1), 114-120. https://doi.org/10.1016/j.pec.2013.02.017 | None identified in June 2019 | Available in British and American English, Dutch, Swedish, Italian, Spanish, Catalan, German, Finnish, Danish, Hebrew, Lithuanian, Chinese, and Japanese. |
| Cardiovascular | Heart failure | Kansas City Cardiomyopathy Questionnaire | KCCQ | USA | 2000 | A measure for health-related quality of life in Heart Failure. A short version exists (KCCQ-12). | 5: Physical limitation, symptoms, self-efficacy, social limitation, quality of life | Self-report | Convergent validity has been demonstrated. | Green, C. P., Porter, C. B., Bresnahan, D. R., & Spertus, J. A. (2000). Development and evaluation of the Kansas City Cardiomyopathy Questionnaire: a new health status measure for heart failure. Journal of the American College of Cardiology, 35(5), 1245-1255. doi: 10.1016/S0735-1097(00)00531-3 | Yes | Yes, fees may apply | https://cvoutcomes.org/faqs/3030 | Solomon, S. D., Zile, M., Pieske, B., Voors, A., Shah, A., Kraigher-Krainer, E., ... & Lefkowitz, M. (2012). The angiotensin receptor neprilysin inhibitor LCZ696 in heart failure with preserved ejection fraction: a phase 2 double-blind randomised controlled trial. The Lancet, 380(9851), 1387-1395. https://doi.org/10.1016/S0140-6736(12)61227-6 | None identified in June 2019 | Available in various languages including Swedish, Italian, German, Portuguese, Spanish, and Norwegian languages. |
| Cardiovascular | Heart failure | Minnesota Living With Heart Failure | MLHF or MLHFQ | USA | 1987 | Measuring the extent to which HF prevents patients from living the way they want to. Two versions exist: The original version 2.0 and the recommended version 3.0 (also called MLHFQ). | 2: Physical, emotional | Self-report | Reliability, validity and responsiveness has been demonstrated with adequate validation across various papers. | Rector, T. S. (1987). Patient's self-assessment of their congestive heart failure: II. Content, reli-ability and validity of a new measure-The Minnesota Living with Heart Failure Questionnaire. Heart failure, 3, 198. https://ci.nii.ac.jp/naid/10005523133/ | Yes | Yes, fees may apply | http://license.umn.edu/technologies/94019_minnesota-living-with-heart-f… | van der Bom, T., Winter, M. M., Bouma, B. J., Groenink, M., Vliegen, H. W., Pieper, P. G., ... & Mulder, B. J. (2013). Effect of valsartan on systemic right ventricular function: a double-blind, randomized, placebo-controlled pilot trial. Circulation, 127(3), 322-330. https://www.ahajournals.org/doi/pdf/10.1161/CIRCULATIONAHA.112.135392 | None identified in June 2019 | |
| Cardiovascular | Ischemic heart disease | Heart Quality Of Life | HeartQoL | USA | 2014 | Ischemic heart disease-specific assessment and evaluation system of the impact of cardiac interventions on patient-reported health-related quality of life. | 2: Physical, emotional | Self-report | Convergent validity, discriminative validity, and evaluative validity have been demonstrated. | Oldridge, N., Höfer, S., McGee, H., Conroy, R., Doyle, F., Saner, H., & HeartQoL Project Investigators). (2014). The HeartQoL: Part I. Development of a new core health-related quality of life questionnaire for patients with ischemic heart disease. European journal of preventive cardiology, 21(1), 90-97. https://doi.org/10.1177%2F2047487312450544 ; Oldridge, N., Höfer, S., McGee, H., Conroy, R., Doyle, F., Saner, H., & HeartQoL Project Investigators). (2014). The HeartQoL: Part II. Validation of a new core health-related quality of life questionnaire for patients with ischemic heart disease. European journal of preventive cardiology, 21(1), 98-106. https://doi.org/10.1177%2F2047487312450545 | Yes | Yes, fees may apply | Contact: Neil Oldridge, neilb@uwm.edu - https://www.escardio.org/Education/Practice-Tools/CVD-prevention-toolbo… | Versteeg, H., Hoogwegt, M. T., Hansen, T. B., Pedersen, S. S., Zwisler, A. D., & Thygesen, L. C. (2013). Depression, not anxiety, is independently associated with 5-year hospitalizations and mortality in patients with ischemic heart disease. Journal of psychosomatic research, 75(6), 518-525. https://doi.org/10.1016/j.jpsychores.2013.10.005 | None identified in June 2019 | Available in the following languages: Danish, Dutch, Flemish, French, German, Hungarian, Italian, Norwegian, Polish, Portuguese, Russian, Spanish, Swedish, and Ukrainian. |
| Cardiovascular | Left ventricular dysfunction | Left Ventricular Dysfunction Questionnaire | LVD-36 or LVDQ | UK | 2000 | Assesses the impact of left ventricular dysfunction daily life and well-being. | Unidimensional | Self-report | Concurrent validity has been demonstrated. | O'leary, C. J., & Jones, P. W. (2000). The left ventricular dysfunction questionnaire (LVD-36): reliability, validity, and responsiveness. Heart, 83(6), 634-640. http://dx.doi.org/10.1136/heart.83.6.634 | Unknown | Unknown | Contact: P. W. Jones, pjones@sghms.ac.uk | Barutcu, C. D., & Mert, H. (2013). The relationship between social support and quality of life in patients with heart failure. J Pak Med Assoc, 63(4), 463-7. https://www.jpma.org.pk/PdfDownload/4114.pdf | None identified in June 2019 | |
| Cardiovascular | Peripheral Arterial Disease | Peripheral Artery Questionnaire | PAQ | USA | 1998 | This measure quantifies patients' physical limitations, symptoms, social function, treatment satisfaction, and quality of life in patients with Peripheral Arterial Disease . | 7: Physical limitation, symptoms, symptom stability, social limitation, treatment satisfaction, quality of life, summary score | Self-report | Construct validity has been demonstrated. | Spertus, J., Jones, P., Poler, S., & Rocha-Singh, K. (2004). The peripheral artery questionnaire: a new disease-specific health status measure for patients with peripheral arterial disease. American heart journal, 147(2), 301-308. https://doi.org/10.1016/j.ahj.2003.08.001 | Yes | Yes, fees may apply | https://cvoutcomes.org/faqs/3030#3162 | Mastenbroek, M. H., Hoeks, S. E., Pedersen, S. S., op Reimer, W. S., Voute, M. T., & Verhagen, H. J. M. (2012). Gender disparities in disease-specific health status in postoperative patients with peripheral arterial disease. European Journal of Vascular and Endovascular Surgery, 43(4), 433-440. https://doi.org/10.1016/j.ejvs.2011.12.022 | None identified in June 2019 | |
| Cardiovascular | Pulmonary hypertension | Cambridge Pulmonary Hypertension Outcome Review | CAMPHOR | UK | 2006 | A measure of impairment, disability and needs based quality of life of patients with pulmonary hypertension. The scale has 25 items. | 3: Overall symptoms (made up of energy, breathlessness and mood subscales), functioning and quality of life | Self-report | Convergent and divergent validity, known group validity, and factor analysis have been demonstrated. | McKenna, S. P., Doughty, N., Meads, D. M., Doward, L. C., & Pepke-Zaba, J. (2006). The Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR): a measure of health-related quality of life and quality of life for patients with pulmonary hypertension. Quality of life Research, 15(1), 103-115. https://link.springer.com/content/pdf/10.1007/s11136-005-3513-4.pdf | Unknown | Unknown | Contact: Stephen McKenna, smckenna@galen-research.com | Taboada, D., Pepke-Zaba, J., Jenkins, D. P., Berman, M., Treacy, C. M., Cannon, J. E., ... & Sheares, K. K. (2014). Outcome of pulmonary endarterectomy in symptomatic chronic thromboembolic disease. European Respiratory Journal, 44(6), 1635-1645. https://erj.ersjournals.com/content/erj/44/6/1635.full.pdf | None identified in June 2019 | Translated and validated into fourteen different languages, including Australian and New Zealand English, German and Swedish. |
| Cardiovascular | Stroke | Communication Outcome After Stroke | COAST | UK | 2008 | A patient-centred, practical and reliable measure that can be used to assess self-perceived communication effectiveness for people with stroke. | 3: Interactive communication, overview of communication, impact and quality of life | Self-report | Item analysis and convergent validity have been demonstrated. | Long, A. F., Hesketh, A., Paszek, G., Booth, M., & Bowen, A. (2008). Development of a reliable self-report outcome measure for pragmatic trials of communication therapy following stroke: the Communication Outcome after Stroke (COAST) scale. Clinical Rehabilitation, 22(12), 1083-1094. https://doi.org/10.1177%2F0269215508090091 | Yes | No | https://www.click2go.umip.com/i/coa/coast.html, edward.maughfling@umip.com | Bowen, A., Hesketh, A., Patchick, E., Young, A., Davies, L., Vail, A., ... & Ralph, M. A. L. (2012). Effectiveness of enhanced communication therapy in the first four months after stroke for aphasia and dysarthria: a randomised controlled trial. Bmj, 345, e4407. doi: 10.1136/bmj.e4407 | None identified in June 2019 | |
| Cardiovascular | Stroke | Patient Reported Evaluation Of Cognitive State | PRECiS | UK | 2016 | PRECiS is a 27 item patient-centred, practical and reliable measure assessing perceived impact of cognitive problems from the unique perspective of stroke survivors. | 4: Skills, life, mood, self | Self-report | Construct validity and factor analysis have been demonstrated. | Patchick, E. L., Horne, M., Woodward‐Nutt, K., Vail, A., & Bowen, A. (2015). Development of a patient‐centred, patient‐reported outcome measure (PROM) for post‐stroke cognitive rehabilitation: qualitative interviews with stroke survivors to inform design and content. Health Expectations, 18(6), 3213-3224. https://doi.org/10.1111/hex.12311 Patchick, E., Vail, A., Wood, A., & Bowen, A. (2016). PRECiS (Patient Reported Evaluation of Cognitive State): psychometric evaluation of a new patient reported outcome measure of the impact of stroke. Clinical rehabilitation, 30(12), 1229-1241. https://doi.org/10.1177%2F0269215515624480 |
Yes | No | https://www.click2go.umip.com/i/coa/precis.html | None identified in June 2019 | None identified in June 2019 | |
| Cardiovascular | Stroke | Southampton Stroke Self-Management Questionnaire | SSSMQ | UK | 2015 | 28 item scale of self-management competency following stroke. | Unidimensional | Self-report | Construct validity has been demonstrated. | Boger, E. J., Hankins, M., Demain, S. H., & Latter, S. M. (2015). Development and psychometric evaluation of a new patient-reported outcome measure for stroke self-management: The Southampton Stroke Self-Management Questionnaire (SSSMQ). Health and quality of life outcomes, 13(1), 165. https://doi.org/10.1186/s12955-015-0349-7 | Unknown | Unknown | Contact: Emma J Boger, e.j.boger@soton.ac.uk | None identified in June 2019 | None identified in June 2019 | |
| Cardiovascular | Stroke | Stroke Impact Scale | SIS 2.0 | USA | 1999 | This measure detects the consequences of stroke, especially mild to moderate stroke on quality of life. | 8: Strength, hand function, ADL/IADL, mobility, communication, emotion, memory and thinking, participation | Self-report | Concurrent validity and factor analysis have been demonstrated. | Duncan, P. W., Wallace, D., Lai, S. M., Johnson, D., Embretson, S., & Laster, L. J. (1999). The stroke impact scale version 2.0: evaluation of reliability, validity, and sensitivity to change. Stroke, 30(10), 2131-2140. https://doi.org/10.1161/01.STR.30.10.2131 | Yes | Unknown | Contact: KU Innovation & Collaboration, kuic@ku.edu | van Eijsden, H. M., van de Port, I. G. L., Visser-Meily, J. M. A., & Kwakkel, G. (2012). Poststroke fatigue: who is at risk for an increase in fatigue?. Stroke research and treatment, 2012. doi: 10.1155/2012/863978 | None identified in June 2019 | |
| Cardiovascular | Stroke | Stroke Self-Efficacy Questionnaire | SSEQ | UK | 2008 | A tool to measure self-efficacy judgements in specific domains of functioning relevant to individuals following stroke. | Unidimensional | Self-report | Criterion validity and principal components analysis have been demonstrated. | Jones, F., Partridge, C., & Reid, F. (2008). The Stroke Self‐Efficacy Questionnaire: measuring individual confidence in functional performance after stroke. Journal of clinical nursing, 17(7b), 244-252. https://doi.org/10.1111/j.1365-2702.2008.02333.x | Unknown | Unknown | Contact: Fiona Jones, fjones@hscs.sgul.ac.uk | Lewin, A., Jöbges, M., & Werheid, K. (2013). The influence of self-efficacy, pre-stroke depression and perceived social support on self-reported depressive symptoms during stroke rehabilitation. Neuropsychological rehabilitation, 23(4), 546-562. https://doi.org/10.1080/09602011.2013.794742 | None identified in June 2019 | |
| Cardiovascular | Stroke | Stroke-Specific Quality Of Life Measure | SS-QOL | USA | 1999 | A measure of health-related quality of life of stroke patients. A carer version also exists (COAST Carer). | 12: Energy, family roles, language, mobility, mood, personality, self-care, social roles, thinking, upper extremity function, vision, and work/productivity | Self-report, proxy | Construct validity and factor analysis have been demonstrated. | Williams, L. S., Weinberger, M., Harris, L. E., Clark, D. O., & Biller, J. (1999). Development of a stroke-specific quality of life scale. Stroke, 30(7), 1362-1369. https://doi.org/10.1161/01.STR.30.7.1362 | Unknown | No | Contact: Linda S. Williams, lwilliams@hsrd.va.iupui.edu | Schmid, A. A., Van Puymbroeck, M., Altenburger, P. A., Schalk, N. L., Dierks, T. A., Miller, K. K., ... & Williams, L. S. (2012). Poststroke balance improves with yoga: a pilot study. Stroke, 43(9), 2402-2407. https://doi.org/10.1161/STROKEAHA.112.658211 | None identified in June 2019 | |
| Cardiovascular | Stroke | Subjective Index Of Physical And Social Outcome | SIPSO | UK | 2000 | A measure of social integration following stroke. It contains 10 items giving an overall score as well as physical and social component scores. | 2: Physical functioning/mobility, social/emotional functioning | Self-report | Factor analysis and construct validity have been demonstrated. | Trigg, R., & Wood, V. A. (2000). The Subjective Index of Physical and Social Outcome (SIPSO): a new measure for use with stroke patients. Clinical Rehabilitation, 14(3), 288-299. https://doi.org/10.1191%2F026921500678119607 | Unknown | Unknown | Contact: Richard Trigg, R.Trigg@bath.ac.uk | McKenna, S., Jones, F., Glenfield, P., & Lennon, S. (2015). Bridges self-management program for people with stroke in the community: a feasibility randomized controlled trial. International Journal of Stroke, 10(5), 697-704. https://doi.org/10.1111%2Fijs.12195 | None identified in June 2019 | |
| Cardiovascular - Mental health | Depression in cardiac patients | Cardiac Depression Scale | CDS | Australia | 1996 | A measure of depressed mood (as 'adjustment disorder with depressed mood') and changes in depression for cardiac patients. The CDS is a 26 item questionnaire. | 2 dimensions and 7 subscales: Sleep, anhedonia, uncertainty, mood, cognition, hopelessness, inactivity | Self-report | Factor analysis was used for validation. | Hare, D. L., & Davis, C. R. (1996). Cardiac Depression Scale: validation of a new depression scale for cardiac patients. Journal of psychosomatic research, 40(4), 379-386. https://doi.org/10.1016/0022-3999(95)00612-5 | Yes | No | Contact: Samia Toukhastic, samia.toukhsati@austing.org.au - or David Hare, david.hare@austin.org.au | Smart, N. A., & Steele, M. (2012). A comparison of 16 weeks of continuous vs intermittent exercise training in chronic heart failure patients. Congestive Heart Failure, 18(4), 205-211. https://onlinelibrary.wiley.com/doi/pdf/10.1111/j.1751-7133.2011.00274.x | None identified in June 2019 | |
| Endocrine | Diabetes | Diabetes Treatment Satisfaction Questionnaire | DTSQs | UK | 1990s | A satisfaction measure regarding treatment regimens in people with diabetes and changes in satisfaction with treatment. Teen and parent versions also exist. The original DTSQ has 8 items and is now referred to as the status version (DTSQs) in order to distinguish it from the DTSQ change version (DTSQc) which has been developed to overcome potential ceiling effects. | Unidimensional | Self-report | Principal components analysis | Bradley C (1994) The Diabetes Treatment Satisfaction Questionnaire: DTSQ. In Bradley C (Ed) Handbook of Psychology and Diabetes: a guide to psychological measurement in diabetes research and practice. Abingdon: Routledge ISBN 9783718655625, formerly published by Harwood Academic Publishers ISBN 3-7186-5562-4: p.111-132. https://diabetes-psychologie.de/downloads/Beschreibung_DTSQ.pdf; Bradley, C., Gamsu, D. S., & Psychological Well‐being Working Group of the WHO/IDF St Vincent Declaration Action Programme for Diabetes. (1994). Guidelines for encouraging psychological well‐being: report of a Working Group of the World Health Organization Regional Office for Europe and International Diabetes Federation European Region St Vincent Declaration Action Programme for Diabetes. Diabetic Medicine, 11(5), 510-516. | Yes | Unknown | https://www.healthpsychologyresearch.com/guidelines/dtsq-diabetes-treat… | Ozder, A., Sekeroglu, M., & Eker, H. H. (2014). Quality of life and satisfaction with treatment in subjects with type 2 diabetes: results from primary health care in Turkey. International journal of clinical and experimental medicine, 7(12), 5715. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4307544/ | None identified in June 2019 | Available in more than 100 languages: https://www.healthpsychologyresearch.com/information/currently-availabl… |
| Endocrine | Type 1 and 2 diabetes | Audit Of Diabetes-Dependent Quality Of Life | ADDQoL | Singapore | 2006 | A measure of individuals' perceptions of the impact of diabetes on their quality of life. An ADDQOL-Teen and an ADDQoL14 also exist. Originally developed in the 1990s, but refined in 2002. | 19: Family life, friendship and social life, close personal relationship, sex life, physical appearance, physical health, work, holiday, leisure activities, local or long-distance journeys, self-confidents, motivation, people's reaction, feelings about the future, financial situation, dependence on others, living condition, freedom to eat, freedom to drink | Self-report | Factor analysis and construct validity have been demonstrated. | Bradley, C., & Speight, J. (2002). Patient perceptions of diabetes and diabetes therapy: assessing quality of life. Diabetes/Metabolism Research and Reviews, 18(S3), S64-S69. https://doi.org/10.1002/dmrr.279 Wee, H. L., Tan, C. E., Goh, S. Y., & Li, S. C. (2006). Usefulness of the Audit of Diabetes-Dependent Quality-of-Life (ADDQoL) questionnaire in patients with diabetes in a multi-ethnic Asian country. Pharmacoeconomics, 24(7), 673-682. https://link.springer.com/article/10.2165/00019053-200624070-00006 |
Yes | Unknown | http://www.healthpsychologyresearch.com/ - Contact: Clare Bradley, c.bradley@rhul.ac.uk |
Papazafiropoulou, A. K., Bakomitrou, F., Trikallinou, A., Ganotopoulou, A., Verras, C., Christofilidis, G., ... & Μelidonis, Α. (2015). Diabetes-dependent quality of life (ADDQOL) and affecting factors in patients with diabetes mellitus type 2 in Greece. BMC research notes, 8(1), 786. https://doi.org/10.1186/s13104-015-1782-8 | None identified in June 2019 | |
| Endocrine | Type 1 and 2 diabetes | Diabetes Care Profile | DCP | USA | 1996 | A measure of the social and psychological factors related to diabetes and its treatment. | 4: Treatment, physiological measures, social factors, psychological factors | Self-report | Construct validity has been demonstrated. | Fitzgerald, J. T., Davis, W. K., Connell, C. M., Hess, G. E., Funnell, M. M., & Hiss, R. G. (1996). Development and validation of the Diabetes Care Profile. Evaluation & the health professions, 19(2), 208-230. https://doi.org/10.1177%2F016327879601900205 | Yes | Unknown | Contact: Pam Campbell , pamcamp@med.umich.edu | Venkatesan, R., Devi, A. M., Parasuraman, S., & Sriram, S. (2012). Role of community pharmacists in improving knowledge and glycemic control of type 2 diabetes. Perspectives in clinical research, 3(1), 26. https://dx.doi.org/10.4103%2F2229-3485.92304 | None identified in June 2019 | |
| Endocrine | Type 1 and 2 diabetes | Diabetes Health Profile | DHP | UK | 1996 | A tool to assess the psychological impact of living with type 1 diabetes. DHP-18 is an adaptation of the DHP-1 for patients with Type 2 diabetes. | 3: Psychological distress, barriers to activity and disinhibited eating | Self-report | Factor analysis, construct validity, and convergent validity have been demonstrated. | Meadows, K., Steen, N., McColl, E., Eccles, M., Shiels, C., Hewison, J., & Hutchinson, A. (1996). The Diabetes Health Profile (DHP): a new instrument for assessing the psychosocial profile of insulin requiring patients—development and psychometric evaluation. Quality of Life Research, 5(2), 242-254. https://link.springer.com/article/10.1007/BF00434746 | Yes | No | https://innovation.ox.ac.uk/outcome-measures/diabetes-health-profile-dh… | Co, M. A., Tan, L. S. M., Tai, E. S., Griva, K., Amir, M., Chong, K. J., ... & Wee, H. L. (2015). Factors associated with psychological distress, behavioral impact and health-related quality of life among patients with type 2 diabetes mellitus. Journal of diabetes and its complications, 29(3), 378-383. https://doi.org/10.1016/j.jdiacomp.2015.01.009 | None identified in June 2019 | |
| Endocrine | Type 1 and 2 diabetes | Diabetes Injection Device - Experience Questionnaire; Diabetes Injection Device - Preference Questionnaire | DID-EQ and DID-PQ | USA | 2018 | A measure of patients’ experiences with diabetes injection delivery systems. | DID-EQ, 3: Satisfaction, ease of use, convenience; DID-PQ: Unidimensional | Self-report | Factor analysis, construct validity, and convergent validity have been demonstrated. | Matza, L. S., Boye, K. S., Stewart, K. D., Paczkowski, R., Jordan, J., & Murray, L. T. (2018). Development of the Diabetes Injection Device Experience Questionnaire (DID-EQ) and Diabetes Injection Device Preference Questionnaire (DID-PQ). Journal of patient-reported outcomes, 2(1), 43. https://doi.org/10.1186/s41687-018-0068-z; Matza, L. S., Stewart, K. D., Paczkowski, R., Coyne, K. S., Currie, B., & Boye, K. S. (2018). Psychometric evaluation of the Diabetes Injection Device Experience Questionnaire (DID-EQ) and Diabetes Injection Device Preference Questionnaire (DID-PQ). Journal of patient-reported outcomes, 2(1), 44. https://doi.org/10.1186/s41687-018-0064-3 | Unknown | Unknown | Contact: Louis Matza, louis.matza@evidera.com | Matza, L. S., Boye, K. S., Currie, B. M., Paczkowski, R., Lando, L. F., Mody, R., & Jordan, J. (2018). Patient perceptions of injection devices used with dulaglutide and liraglutide for treatment of type 2 diabetes. Current medical research and opinion, 34(8), 1457-1464. https://doi.org/10.1080/03007995.2018.1465903 | None identified in June 2019 | |
| Endocrine | Type 1 and 2 diabetes | Diabetes Intention, Attitude, And Behaviour Questionnaire | DIAB-Q | UK, USA | 2016 | A brief questionnaire to measure physical activity, dietary control, maintenance of a healthy weight, and psychological antecedents. It is a new measure for intention to self-care in diabetes, with potential utility ion identifying optimal type-2-diabetes management approaches that incorporated individual beliefs and preferences. | 6: Behaviour, planning, intention, perceived behavioural control, attitude, and subjective norm | Self-report | Construct validity and factor analysis were used for validation. | Traina, S. B., Mathias, S. D., Colwell, H. H., Crosby, R. D., & Abraham, C. (2016). The Diabetes Intention, Attitude, and Behavior Questionnaire: evaluation of a brief questionnaire to measure physical activity, dietary control, maintenance of a healthy weight, and psychological antecedents. Patient preference and adherence, 10, 213. https://dx.doi.org/10.2147%2FPPA.S94878 | Unknown | Unknown | Contact: Shana Traina, straina@its.jnj.com | None identified in June 2019 | None identified in June 2019 | |
| Endocrine | Type 1 and 2 diabetes | Diabetes Medication Satisfaction | DiabMedSat | USA | 2006 | A measure of diabetes treatment satisfaction, applicable to a wide range of diabetes therapies. | 3: Burden, efficacy, symptoms | Self-report | Construct validity and criterion validity have been demonstrated. | Brod, M., Skovlund, S. E., & Wittrup-Jensen, K. U. (2006). Measuring the impact of diabetes through patient report of treatment satisfaction, productivity and symptom experience. Quality of Life Research, 15(3), 481-491. https://link.springer.com/article/10.1007/s11136-005-1624-6 | Yes | Unknown | Mapi Research Trust - PROVIDE https://eprovide.mapi-trust.org/instruments/diabetes-medication-satisfa… | Pratley, R. E., Nauck, M. A., Barnett, A. H., Feinglos, M. N., Ovalle, F., Harman-Boehm, I., ... & Rosenstock, J. (2014). Once-weekly albiglutide versus once-daily liraglutide in patients with type 2 diabetes inadequately controlled on oral drugs (HARMONY 7): a randomised, open-label, multicentre, non-inferiority phase 3 study. The lancet Diabetes & endocrinology, 2(4), 289-297. http://news.medlive.cn/uploadfile/20140213/13922771709932.pdf | None identified in June 2019 | Available in many languages https://eprovide.mapi-trust.org/instruments/diabetes-medication-satisfa… |
| Endocrine | Type 1 and 2 diabetes | Diabetes Quality Of Life-Brief Clinical Inventory | DQoL-BCI | USA | 2004 | A total health–related quality of life score that predicts self-reported diabetes care behaviours and satisfaction with diabetes control. | 4: Satisfaction with treatment, impact of treatment, worry about the future effects of diabetes, and worry about social/vocational issues. | Self-report | Convergent validity, predictive validity, and factor analysis have been demonstrated. | Burroughs, T. E., Desikan, R., Waterman, B. M., Gilin, D., & McGill, J. (2004). Development and validation of the diabetes quality of life brief clinical inventory. Diabetes Spectrum, 17(1), 41-49. http://spectrum.diabetesjournals.org/content/diaspect/17/1/41.full.pdf | Unknown | Unknown | Contact: Thomas E. Burroughs, tom.burroughs@health.slu.edu | Tamir, O., Wainstein, J., Raz, I., Shemer, J., & Heymann, A. (2012). Quality of life and patient-perceived difficulties in the treatment of type 2 diabetes. The review of diabetic studies: RDS, 9(1), 46. https://dx.doi.org/10.1900%2FRDS.2012.9.46 | None identified in June 2019 | Available in Iranian, Polish, Malaysian. |
| Endocrine | Type 1 and 2 diabetes | Diabetic Foot Ulcer Scale | DFS | UK | 2002 | A measure of the impact of diabetic foot ulcers and their treatment on quality of life from the patient’s perspective. Two versions are available: patient version and carer version. A short form (DFS-SF) is also available. | 11: Leisure, physical health, daily activities, emotions, noncompliance, family, friends, positive attitude, treatment, satisfaction, and financial | Self-report | Confirmatory factor analysis and construct validity have been demonstrated. | Abetz, L., Sutton, M., Brady, L., McNulty, P., & Gagnon, D. D. (2002). The Diabetic Foot Ulcer Scale (DFS): a quality of life instrument for use in clinical trials. Practical Diabetes International, 19(6), 167-175. https://doi.org/10.1002/pdi.356 | Yes | Unknown | Mapi Research Trust - PROVIDE https://eprovide.mapi-trust.org/instruments/diabetic-foot-ulcer-scale | Sekhar, M. S., Thomas, R. R., Unnikrishnan, M. K., Vijayanarayana, K., & Rodrigues, G. S. (2015, September). Impact of diabetic foot ulcer on health-related quality of life: A cross-sectional study. In Seminars in vascular surgery (Vol. 28, No. 3-4, pp. 165-171). WB Saunders. https://doi.org/10.1053/j.semvascsurg.2015.12.001 | None identified in June 2019 | |
| Endocrine | Type 1 and 2 diabetes | Problem Areas In Diabetes Scale | PAID | USA | 1995 | A 20 item measure of emotional functioning in diabetes. Short forms also exist with five- (PAID-5) and one item (PAID-1). | Unidimensional | Self-report | Concurrent validity has been demonstrated. | Polonsky, W. H., Anderson, B. J., Lohrer, P. A., Welch, G., Jacobson, A. M., Aponte, J. E., & Schwartz, C. E. (1995). Assessment of diabetes-related distress. Diabetes care, 18(6), 754-760. https://doi.org/10.2337/diacare.18.6.754 | Yes | No | Contact: Dr G. Welch, Garry.Welch@Joslin.Harvard.edu | Halperin, F., Ding, S. A., Simonson, D. C., Panosian, J., Goebel-Fabbri, A., Wewalka, M., ... & Lautz, D. (2014). Roux-en-Y gastric bypass surgery or lifestyle with intensive medical management in patients with type 2 diabetes: feasibility and 1-year results of a randomized clinical trial. JAMA surgery, 149(7), 716-726. doi: 10.1001/jamasurg.2014.514 file:///C:/Users/mq20162239/Downloads/soi140033%20(1).pdf |
None identified in June 2019 | Available in nine other languages. |
| Endocrine | Type 1 and 2 diabetes | Self Care Inventory-Revised | SCI-R | USA | 2005 | A measure of perceived adherence to diabetes self-care recommendations, among adults with diabetes. | 2: Self-management, engagement | Self-report | Construct validity, concurrent validity, and factor analysis have been demonstrated. | Weinger, K., Butler, H. A., Welch, G. W., & La Greca, A. M. (2005). Measuring diabetes self-care: a psychometric analysis of the Self-Care Inventory-Revised with adults. Diabetes care, 28(6), 1346-1352. https://doi.org/10.2337/diacare.28.6.1346 | Unknown | Unknown | Contact: Katie Weinger, katie.weinger@joslin.harvard.edu | Zagarins, S. E., Allen, N. A., Garb, J. L., & Welch, G. (2012). Improvement in glycemic control following a diabetes education intervention is associated with change in diabetes distress but not change in depressive symptoms. Journal of behavioral medicine, 35(3), 299-304. https://link.springer.com/article/10.1007/s10865-011-9359-z | None identified in June 2019 | |
| Endocrine | Type 1 and 2 diabetes | Treatment Related Impact Measure For Diabetes And Diabetes Device | TRIM-D and TRIM-D Device | UK, USA | 2009 | A measure of treatment related impact on subjects of diabetes medication and diabetes devices. | 7: Treatment burden, daily life, diabetes management, compliance, psychological health, device function, device bother | Self-report | Exploratory factor analysis, convergency validity, and known group validity have been demonstrated. | Brod, M., Hammer, M., Christensen, T., Lessard, S., & Bushnell, D. M. (2009). Understanding and assessing the impact of treatment in diabetes: the Treatment-Related Impact Measures for Diabetes and Devices (TRIM-Diabetes and TRIM-Diabetes Device). Health and quality of life outcomes, 7(1), 83. https://doi.org/10.1186/1477-7525-7-83 | Yes | Unknown | Mapi Research Trust - PROVIDE - https://eprovide.mapi-trust.org/instruments/treatment-related-impact-me… | Kabul, S., Hood, R. C., Duan, R., DeLozier, A. M., & Settles, J. (2016). Patient-reported outcomes in transition from high-dose U-100 insulin to human regular U-500 insulin in severely insulin-resistant patients with type 2 diabetes: analysis of a randomized clinical trial. Health and quality of life outcomes, 14(1), 139. https://doi.org/10.1186/s12955-016-0541-4 | None identified in June 2019 | |
| Endocrine | Type 2 diabetes | Diabetes Symptom Checklist-Revised | DSC-R | USA, Canada, France, Germany, Spain, UK | 2009 | A measure of both the occurrence and the perceived burden of physical and psychological symptoms related to type 2 diabetes and its possible complications. The revised scale differs by means of an extra frequency scale; not difference in content. | 8: Hyperglycaemic, hypoglycaemic, psychological cognitive, psychological-fatigue, cardiovascular, neurological pain, neurological-sensory, and ophthalmologic | Self-report | Confirmatory factor analysis, construct validity, and discriminative validity have been demonstrated. | Arbuckle, R. A., Humphrey, L., Vardeva, K., Arondekar, B., Danten-Viala, M., Scott, J. A., & Snoek, F. J. (2009). Psychometric evaluation of the Diabetes Symptom Checklist-Revised (DSC-R)—a measure of symptom distress. Value in health, 12(8), 1168-1175. https://doi.org/10.1111/j.1524-4733.2009.00571.x | Yes | Unknown | Contact: Rob Arbuckle, Rob.Arbuckle@mapivalues.com - https://www.vumc.com/departments/diabetes-psychology/measures/user-agre… | Park, H., Park, C., Quinn, L., & Fritschi, C. (2015). Glucose control and fatigue in type 2 diabetes: the mediating roles of diabetes symptoms and distress. Journal of advanced nursing, 71(7), 1650-1660. https://dx.doi.org/10.1111%2Fjan.12632 | None identified in June 2019 | Available in other languages including Korean, Dutch, etc. |
| Gastrointestinal | Chronic liver disease | Chronic Liver Disease Questionnaire | CLDQ | USA | 1999 | A measure assessing all relevant domains of health-related quality of life in patients with chronic liver disease. | 6: Fatigue, emotional function, abdominal symptoms, worry, activity, systemic symptoms | Self-report | Factor analysis was used for validation. | Younossi, Z. M., Guyatt, G., Kiwi, M., Boparai, N., & King, D. (1999). Development of a disease specific questionnaire to measure health related quality of life in patients with chronic liver disease. Gut, 45(2), 295-300. http://dx.doi.org/10.1136/gut.45.2.295 | Unknown | Unknown | Contact: Z. M. Younossi, EA - deena.hallaji@inova.org | Chang, S. C., Yang, S. S., Chang, C. C., Lin, C. C., Chung, Y. C., & Li, T. C. (2014). Assessment of health-related quality of life in antiviral-treated Taiwanese chronic hepatitis C patients using SF-36 and CLDQ. Health and quality of life outcomes, 12(1), 97. https://doi.org/10.1186/1477-7525-12-97 | None identified in June 2019 | |
| Gastrointestinal | Chronic liver disease | Liver Disease Quality Of Life Questionnaire | LDQOL | USA | 2000 | A measure of functional status and sense of well-being in individuals with chronic liver disease. The LDQOL uses the SF-36 as a generic core and 12 disease-targeted multi item scales. Short form is also available (LDQOL-36/SF-LDQOL). | 12: Symptoms, effects on activities of daily living, concentration, memory, sexual function, sexual problems, sleep, loneliness, hopelessness, quality of social interaction, health distress, self-perceived stigma of liver disease | Self-report | Exploratory factor analysis and construct validity have been demonstrated. | Gralnek, I. M., Hays, R. D., Kilbourne, A., Rosen, H. R., Keeffe, E. B., Artinian, L., ... & Martin, P. (2000). Development and evaluation of the liver disease quality of life instrument in persons with advanced, chronic liver disease—the LDQOL 1.0. The American journal of gastroenterology, 95(12), 3552. https://doi.org/10.1017/S0033291702006700 | Unknown | Unknown | Contact: Ian Gralnek | Mabrouk, M., Esmat, G., Yosry, A., El-Serafy, M., Doss, W., Zayed, N., ... & Omar, A. (2012). Health-related quality of life in Egyptian patients after liver transplantation. Annals of hepatology, 11(6), 882-890. https://www.medigraphic.com/pdfs/hepato/ah-2012/ah126j.pdf | None identified in June 2019 | |
| Gastrointestinal | Functional gastrointestinal disorders - irritable bowel syndrome and peptic ulcer disease | Gastrointestinal Symptom Rating Scale | GSRS | Germany | 1988 | A symptom assessment tool, measuring frequency, intensity, duration and impact on daily life of a variety of gastrointestinal symptoms. Originally developed in German. There is a specific IBS version (GSRS-IBS). | 5 symptom clusters: Reflux, Abdominal pain, Indigestion, Diarrhoea and Constipation | Self-report | Reliability, validity and responsiveness has been demonstrated with adequate validation across various papers. | Svedlund, J., Sjödin, I., & Dotevall, G. (1988). GSRS—a clinical rating scale for gastrointestinal symptoms in patients with irritable bowel syndrome and peptic ulcer disease. Digestive diseases and sciences, 33(2), 129-134. https://link.springer.com/article/10.1007/BF01535722 | Unknown | Unknown | Contact: Jan Svedlund, jan.svedlund@neuro.gu.se | Prince, A. C., Myers, C. E., Joyce, T., Irving, P., Lomer, M., & Whelan, K. (2016). Fermentable carbohydrate restriction (low FODMAP diet) in clinical practice improves functional gastrointestinal symptoms in patients with inflammatory bowel disease. Inflammatory bowel diseases, 22(5), 1129-1136. https://doi.org/10.1097/MIB.0000000000000708 | None identified in June 2019 | |
| Gastrointestinal | Gastrointestinal diseases | Gastrointestinal Quality Of Life Index | GIQLI | Germany | 1995 | A measure of quality of life specific for the gastrointestinal tract. A short form is also available: GLQLI-10. Originally developed in German. | 5: Core symptoms, physical, psychological, social and disease specific items | Self-report | Criterion validity has been demonstrated. | Eypasch, E., Williams, J. I., Wood‐Dauphinee, S., Ure, B. M., Schmulling, C., Neugebauer, E., & Troidl, H. (1995). Gastrointestinal Quality of Life Index: development, validation and application of a new instrument. British Journal of Surgery, 82(2), 216-222. https://doi.org/10.1002/bjs.1800820229 | Yes | No | Contact: Dr Ernst Eypasch, eypasch@hgkkoeln.de | Peterli, R., Borbély, Y., Kern, B., Gass, M., Peters, T., Thurnheer, M., ... & Schiesser, M. (2013). Early results of the Swiss Multicentre Bypass or Sleeve Study (SM-BOSS): a prospective randomized trial comparing laparoscopic sleeve gastrectomy and Roux-en-Y gastric bypass. Annals of surgery, 258(5), 690. https://dx.doi.org/10.1097%2FSLA.0b013e3182a67426 | None identified in June 2019 | |
| Gastrointestinal | Gastrointestinal disorders: GERD, dyspepsia, and gastroparesis | Patient Assessment Of Gastrointestinal Disorders - Quality Of Life | PAGI-QoL | USA, France, Germany, Italy, the Netherlands, and Poland |
2004 | A measure of quality of life in patients with upper Gastrointestinal disorders. PAGI-QoL which measures quality of life outcomes of patients with upper Gastrointestinal disorders, was developed in parallel with a complementary instrument to comprehensively measure disease-specific symptoms (PAGI-SYM). These instruments can be used separately or together. | 5: Daily Activities, Clothing, Diet and Food Habits, Relationship, Psychological Well-Being and Distress | Self-report | Construct validity and concurrent validity have been demonstrated. | Trudeau, E., Marquis, P., Kahrilas, P., Stanghellini, V., Talley, N. J., Tack, J., ... & Dubois, D. (2004). Cross-cultural development and validation of a patient self-administered questionnaire to assess quality of life in upper gastrointestinal disorders: The PAGI-QOL©. Quality of Life Research, 13(10), 1751-1762. https://link.springer.com/article/10.1007/s11136-004-8751-3 | Yes | Unknown | Contact: Christine de la Loge, cdelaloge@mapi.fr | Olausson, E. A., Störsrud, S., Grundin, H., Isaksson, M., Attvall, S., & Simrén, M. (2014). A small particle size diet reduces upper gastrointestinal symptoms in patients with diabetic gastroparesis: a randomized controlled trial. The American journal of gastroenterology, 109(3), 375. doi: 10.1038/ajg.2013.453 | None identified in June 2019 | Available in five languages: Dutch, French, German, Italian, and Polish. |
| Gastrointestinal | Gastrointestinal disorders: GERD, dyspepsia, and gastroparesis | Patient Assessment Of Gastrointestinal Disorders - Symptom Severity Index | PAGI-SYM | USA, France, Germany, Italy, the Netherlands, and Poland |
2004 | This measure examines symptom severity in patients with upper Gastrointestinal disorders. PAGI-SYM which measures specific symptoms of patients with upper Gastrointestinal disorders, was developed in parallel with a complementary instrument to comprehensively measure disease quality of life outcomes (PAGI-quality of life). These instruments can be used separately or together. | 6: Heartburn/regurgitation, nausea/vomiting, post-prandial fullness/early satiety, bloating, upper abdominal pain, and lower abdominal pain | Self-report | Construct validity has been demonstrated. | Rentz, A. M., Kahrilas, P., Stanghellini, V., Tack, J., Talley, N. J., Trudeau, E., ... & Revicki, D. A. (2004). Development and psychometric evaluation of the patient assessment of upper gastrointestinal symptom severity index (PAGI-SYM) in patients with upper gastrointestinal disorders. Quality of Life Research, 13(10), 1737-1749. https://link.springer.com/article/10.1007/s11136-004-9567-x | Yes | Unknown | Contact: Anne M. Rentz, rentz@medtap.com | Olausson, E. A., Störsrud, S., Grundin, H., Isaksson, M., Attvall, S., & Simrén, M. (2014). A small particle size diet reduces upper gastrointestinal symptoms in patients with diabetic gastroparesis: a randomized controlled trial. The American journal of gastroenterology, 109(3), 375. doi: 10.1038/ajg.2013.453 | None identified in June 2019 | Available in five languages: Dutch, French, German, Italian, and Polish. |
| Gastrointestinal | Inflammatory bowel disease | Edinburgh Quality Of Life Questionnaire | EIBDQ | UK | 2002 | A disease-specific measure of inflammatory bowel disease in terms of both physical impact and health related quality of life consequences. | 3: Disease-specific, bowel-specific, information | Self-report | Factor analysis and convergent validity have been demonstrated. | Smith, G. D., Watson, R., & Palmer, K. R. (2002). Inflammatory bowel disease: developing a short disease specific scale to measure health related quality of life. International journal of nursing studies, 39(6), 583-590. https://doi.org/10.1016/S0020-7489(01)00042-6 | Unknown | Unknown | Contact: G.D. Smith, g.d.smith@ed.ac.uk | None identified in June 2019 | None identified in June 2019 | |
| Gastrointestinal | Inflammatory bowel disease | IBD Disability Index | IBD-DI | Australia | 2014 | The IBD disability index is based on the WHO's International Classification of Functioning, Health, and Disability. This classification describes the impact of illness on a patient as a dynamic interaction between illness, personal, and environmental factors. | 5: General health, body functions, body structures, activities and participation, environmental factors | Self-report, or administered by interviewer | Convergent and divergent validity have been demonstrated. | Peyrin-Biroulet, L., Cieza, A., Sandborn, W. J., Coenen, M., Chowers, Y., Hibi, T., ... & International Programme to Develop New Indexes for Crohn's Disease (IPNIC) group. (2012). Development of the first disability index for inflammatory bowel disease based on the international classification of functioning, disability and health. Gut, 61(2), 241-247. http://dx.doi.org/10.1136/gutjnl-2011-300049 Leong, R. W., Huang, T., Ko, Y., Jeon, A., Chang, J., Kohler, F., & Kariyawasam, V. (2014). Prospective validation study of the International Classification of Functioning, Disability and Health score in Crohn's disease and ulcerative colitis. Journal of Crohn's and Colitis, 8(10), 1237-1245. https://doi.org/10.1016/j.crohns.2014.02.028 |
Unknown | Unknown | Contact: Jean-Frederic Colombel, jean-frederic.colombel@chru-lille.fr | van der Have, M., Fidder, H. H., Leenders, M., Kaptein, A. A., van der Valk, M. E., van Bodegraven, A. A., ... & van der Meulen-de Jong, A. E. (2015). Self-reported disability in patients with inflammatory bowel disease largely determined by disease activity and illness perceptions. Inflammatory bowel diseases, 21(2), 369-377. https://doi.org/10.1097/MIB.0000000000000278 | None identified in June 2019 | |
| Gastrointestinal | Inflammatory bowel disease | IBD Disability Score | IBD-DS | Australia | 2013 | Assesses the disability of patients with inflammatory bowel disease. | 6: Support, gastrointestinal-related symptoms, self-care, major life activities, mental-related symptoms, environmental-related issues | Self-report | Convergent validity has been demonstrated. | Allen, P. B., Kamm, M. A., Peyrin‐Biroulet, L., Studd, C., Mc Dowell, C., Allen, B. C. M., ... & Brown, S. (2013). Development and validation of a patient‐reported disability measurement tool for patients with inflammatory bowel disease. Alimentary pharmacology & therapeutics, 37(4), 438-444. https://doi.org/10.1111/apt.12187 | Unknown | Unknown | Contact: M. A. Kamm, mkamm@unimelb.edu.au | None identified in June 2019 | None identified in June 2019 | |
| Gastrointestinal | Inflammatory bowel disease | IBD-Control | IBD-C | UK | 2014 | A measure of disease control from the patient’s perspective using a simple set of generic items applicable to all patients with IBD. | Unidimensional | Self-report | Construct validity has been demonstrated. | Bodger, K., Ormerod, C., Shackcloth, D., & Harrison, M. (2014). Development and validation of a rapid, generic measure of disease control from the patient's perspective: the IBD-control questionnaire. Gut, 63(7), 1092-1102. http://dx.doi.org/10.1136/gutjnl-2013-305600 | Unknown | Unknown | Contact: Keith Bodger, kbodger@liverpool.ac.uk | Razanskaite, V., Bettey, M., Downey, L., Wright, J., Callaghan, J., Rush, M., ... & Efrem, E. (2017). Biosimilar infliximab in inflammatory bowel disease: outcomes of a managed switching programme. Journal of Crohn's and Colitis, 11(6), 690-696. https://doi.org/10.1093/ecco-jcc/jjw216 | None identified in June 2019 | |
| Gastrointestinal | Inflammatory bowel disease | Inflammatory Bowel Disease Quality Of Life Questionnaire | IBDQOL | Canada | 1992 | A measure of quality of life in patients with inflammatory bowel disease. The IBDQOL is a extended version of the IBQD by Irvine and Guyatt. | 5: Systemic symptoms, bowel symptoms, functional impairment, social impairment, emotional function | Self-report | Known group difference validity has been demonstrated. | Love, J. R., Irvine, E. J., & Fedorak, R. N. (1992). Quality of life in inflammatory bowel disease. Journal of clinical gastroenterology, 14(1), 15-19. https://europepmc.org/abstract/med/1556402 | Unknown | Unknown | Contact information not available | Iglesias-Rey, M., Barreiro-de Acosta, M., Caamaño-Isorna, F., Rodríguez, I. V., Ferreiro, R., Lindkvist, B., ... & Dominguez-Munoz, J. E. (2013). Psychological factors are associated with changes in the health-related quality of life in inflammatory bowel disease. Inflammatory bowel diseases, 20(1), 92-102. https://doi.org/10.1097/01.MIB.0000436955.78220.bc | None identified in June 2019 | |
| Gastrointestinal | Inflammatory bowel disease | Irritable Bowel Syndrome - Diarrhea Daily Symptom Diary And Event Log | IBS-D Daily Symptom Diary and Event Log | USA | 2016 | 7 items to evaluate treatment benefit in diarrhea-predominant IBS using a Daily Symptom Diary and Event Log. | 7: Abdominal pain, stomach pain, abdominal pressure, bloating, abdominal cramping, frequency of gas, and the occurrence of accidents | Self-report | Construct validity has been demonstrated. | Marquis, P., Lasch, K. E., Delgado-Herrera, L., Kothari, S., Lembo, A., Lademacher, C., ... & Rosa, K. (2014). Qualitative development of a patient-reported outcome symptom measure in diarrhea-predominant irritable bowel syndrome. Clinical and translational gastroenterology, 5(6), e59. ; Rosa, K., Delgado-Herrera, L., Zeiher, B., Banderas, B., Arbuckle, R., Spears, G., & Hudgens, S. (2016). Psychometric assessment of the IBS-D daily symptom diary and symptom event log. Quality of Life Research, 25(12), 3197-3208. https://link.springer.com/article/10.1007/s11136-016-1335-1 | Unknown | Unknown | Contact: Leticia Delgado-Herrera, Leticia.Delgado-Herrera@astellas.com | None identified in June 2019 | None identified in June 2019 | Available in 10 languages: Chinese (People’s Republic of China), Dutch (the Netherlands), French (Belgium), German (Germany), Japanese (Japan), Polish (Poland), Portuguese (Brazil), Russian (Russia), Spanish (Mexico), and Spanish |
| Gastrointestinal | Inflammatory bowel disease | Rating Form Of IBD Patient Concerns | RFIPC | USA | 1991 | A measure of the worries and concerns associated with inflammatory bowel disease and its treatments. | 4: impact of disease, sexual intimacy, complications of disease, body stigma | Self-report | Construct validity and factor analysis have been demonstrated. | Drossman, D. A., Leserman, J. A. N. E., Li, Z. M., Mitchell, C. M., Zagami, E. A., & Patrick, D. L. (1991). The rating form of IBD patient concerns: a new measure of health status. Psychosomatic medicine, 53(6), 701-712. https://www.researchgate.net/profile/Douglas_Drossman/publication/21396… | Unknown | Unknown | Contact: Douglas A. Drossman, drossman@med.unc.edu | Jelsness-Jørgensen, L. P., Bernklev, T., Henriksen, M., Torp, R., & Moum, B. (2012). Chronic fatigue is associated with increased disease-related worries and concerns in inflammatory bowel disease. World Journal of Gastroenterology: WJG, 18(5), 445. https://dx.doi.org/10.3748%2Fwjg.v18.i5.445 | None identified in June 2019 | Available in Swedish, Norwegian, Spanish, French, Italian, Greek. |
| Gastrointestinal | Inflammatory bowel disease - Crohn's disease | Crohn's Life Impact Questionnaire | CLIQ | UK | 2015 | A measure of the impact of Crohn's disease and its treatment from the patients' perspective. | Unidimensional | Self-report | Construct validity has been demonstrated. | Wilburn, J., McKenna, S. P., Twiss, J., Kemp, K., & Campbell, S. (2015). Assessing quality of life in Crohn’s disease: development and validation of the Crohn’s Life Impact Questionnaire (CLIQ). Quality of Life Research, 24(9), 2279-2288. doi: 10.1007/s11136-015-0947-1 https://link.springer.com/content/pdf/10.1007%2Fs11136-015-0947-1.pdf | Unknown | Unknown | Contact: Jeanette Wilburn, jwilburn@galen-research.com | None identified in June 2019 | None identified in June 2019 | |
| Gastrointestinal | Inflammatory bowel disease - Crohn's disease | Harvey Bradshaw Index | HBI | USA | 1980 | The 12 item instrument Harvey Bradshaw Index for Crohn’s disease (HBI) measures disease-specific symptoms The HBI is a simplification of the Crohn's Disease Activity Index (CDAI). | 5: General well-being, abdominal pain, number of liquid stools, abdominal mass, complications | Self-report | Validity and reliability have been demonstrated. | Harvey, R. F., & Bradshaw, J. M. (1980). A simple index of Crohn's-disease activity. The Lancet, 315(8167), 514. https://doi.org/10.1016/S0140-6736(80)92767-1 | Unknown | Unknown | Contact information not available | Marcil, V., Levy, E., Amre, D., Serban, D., Bitton, A., Sant’Anna, A. M. G. D., ... & Seidman, E. G. (2019). A Cross-Sectional Study on Malnutrition in Inflammatory Bowel Disease: Is There a Difference Based on Pediatric or Adult Age Grouping?. Inflammatory bowel diseases. https://doi.org/10.1093/ibd/izy403 | None identified in June 2019 | |
| Gastrointestinal | Inflammatory bowel disease - Ulcerative colitis | Social Impact Of Chronic Conditions - Inflammatory Bowel Disease | SICC-IBD | UK | 2012 | Assesses social dysfunction of IBD patients. | 4: Education, work, earnings, relationships | Self-report | Criterion and construct validity have been demonstrated. | Smith, J. J., Netuveli, G., Sleight, S. P., Das, P., Tekkis, P. P., Gabe, S. M., ... & Nicholls, R. J. (2012). Development of a social morbidity score in patients with chronic ulcerative colitis as a potential guide to treatment. Colorectal Disease, 14(5), e250-e257. https://doi.org/10.1111/j.1463-1318.2012.02880.x | Unknown | Unknown | Contact: R. J. Nicholls, j.nicholls@imperial.ac.uk | None identified in June 2019 | None identified in June 2019 | |
| Gastrointestinal | Inflammatory bowel disease - ulcerative colitis | Padova Inflammatory Bowel Disease Quality Of Life | PIBDQL | Italy | 1995 | A measure of quality of life in patients with inflammatory bowel disease. | 4: intestinal symptoms, systemic symptoms, emotional function, social function | Self-report | Construct validity has been demonstrated. | Martin, A., Leone, L., Fries, W., & Naccarato, R. (1995). Quality of life in inflammatory bowel disease. The Italian journal of gastroenterology, 27(8), 450-454. https://europepmc.org/abstract/med/8775474 ; Scarpa, M., Victor, C. J., O’Connor, B. I., Cohen, Z., & McLeod, R. S. (2009). Validation of an English version of the Padova quality of life instrument to assess quality of life following ileal pouch anal anastomosis. Journal of Gastrointestinal Surgery, 13(3), 416. https://link.springer.com/article/10.1007/s11605-008-0775-5 | Unknown | Unknown | Contact: Robin McLeod, rmcleod@mtsinai.on.ca | None identified in June 2019 | None identified in June 2019 | Originally validated in Italian. English version validated in the US. |
| Gastrointestinal | Inflammatory bowel disease - ulcerative colitis and Crohn's disease | Crohn's And Ulcerative Colitis Questionnaire | CUCQ | UK | 2014 | A 32 item quality of life measure for inflammatory bowel disease. Specifically for patients with Crohn's and ulcerative colitis. | Unidimensional | Self-report | Construct validity and factor analysis have been demonstrated. | Alrubaiy, L., Cheung, W. Y., Dodds, P., Hutchings, H. A., Russell, I. T., Watkins, A., & Williams, J. G. (2014). Development of a short questionnaire to assess the quality of life in Crohn’s disease and ulcerative colitis. Journal of Crohn's and Colitis, 9(1), 66-76. https://doi.org/10.1093/ecco-jcc/jju005 | Unknown | Unknown | Contact: Laith Alrubaiy, l.alrubaiy@swansea.ac.uk | Yoon, J. Y., Shin, J. E., Park, S. H., Park, D. I., & Cha, J. M. (2017). Disability due to inflammatory bowel disease is correlated with drug compliance, disease activity, and quality of life. Gut and liver, 11(3), 370. https://dx.doi.org/10.5009%2Fgnl16422 | None identified in June 2019 | Available in Korean. |
| Gastrointestinal | Inflammatory bowel disease - ulcerative colitis and Crohn's disease | Inflammatory Bowel Disease Questionnaire | IBDQ | Canada | 1989 | A measure of quality of life of patients with inflammatory bowel disease. There are also a Paediatric Inflammatory Bowel Disease Questionnaire (PEDIBDQ) (Forget S, et al.) and short versions (SIBDQ and IBDQ-36). | 4: Bowel symptoms, systemic symptoms, emotional function, social function | Self-report | Validity and reliability have been demonstrated. | Guyatt, G., Mitchell, A., Irvine, E. J., Singer, J., Williams, N., Goodacre, R., & Tompkins, C. (1989). A new measure of health status for clinical trials in inflammatory bowel disease. Gastroenterology, 96(3), 804-810. https://doi.org/10.1016/0016-5085(89)90905-0 ; Guyatt, G., Mitchell, A., Irvine, E. J., Singer, J., Williams, N., Goodacre, R., & Tompkins, C. (1989). A new measure of health status for clinical trials in inflammatory bowel disease. Gastroenterology, 96(3), 804-810. https://doi.org/10.1016/0895-4356(89)90128-5 | Yes | Unknown | Contact: McMaster Industry Liaison Office at McMaster University, milo@mcmaster.ca - http://milo.mcmaster.ca/questionnaires/qol-request | Moradkhani, A., Beckman, L. J., & Tabibian, J. H. (2013). Health-related quality of life in inflammatory bowel disease: psychosocial, clinical, socioeconomic, and demographic predictors. Journal of Crohn's and Colitis, 7(6), 467-473. https://doi.org/10.1016/j.crohns.2012.07.012 | None identified in June 2019 | Available in other languages: Dutch, Portuguese, Spanish, Korean, UK English, Greek, Swedish, Norwegian, Japanese, German, Chinese, Lebanese, Brazilian. |
| Gastrointestinal | Inflammatory bowel disease - ulcerative colitis and Crohn's disease | Inflammatory Bowel Disease Symptoms Inventory | IBDSI | Canada | 2019 | A 38 item measure of symptoms of inflammatory bowel disease. A short form is also available with 26 items (IBDSI-SF). | 5: Bowel symptoms, abdominal discomfort, fatigue, bowel complications, and systemic complications | Self-report | Confirmatory factor analysis, convergent validity, and concurrent validity have been demonstrated. | Sexton, K. A., Walker, J. R., Targownik, L. E., Graff, L. A., Haviva, C., Beatie, B. E., ... & Bernstein, C. N. (2019). The Inflammatory Bowel Disease Symptom Inventory: A Patient-report Scale for Research and Clinical Application. Inflammatory bowel diseases. https://doi.org/10.1093/ibd/izz038 | Unknown | Unknown | Contact: Charles N. Bernstein, Charles.Bernstein@umanitoba.ca | None identified in June 2019 | None identified in June 2019 | |
| Gastrointestinal | Inflammatory bowel disease - ulcerative colitis and Crohn's disease | Manitoba Inflammatory Bowel Disease Index | MIBDI | Canada | 2009 | A 6-level, single item, patient-defined that measures disease activity over the previous 6 months. | Unidimensional | Self-report | Convergent validity has been demonstrated. | Clara, I., Lix, L. M., Walker, J. R., Graff, L. A., Miller, N., Rogala, L., ... & Bernstein, C. N. (2009). The Manitoba IBD Index: evidence for a new and simple indicator of IBD activity. The American journal of gastroenterology, 104(7), 1754. doi: 10.1038/ajg.2009.197 | Unknown | Unknown | Contact: Charles N. Bernstein, cbernst@cc.umanitoba.ca | Targownik, L. E., Sexton, K. A., Bernstein, M. T., Beatie, B., Sargent, M., Walker, J. R., & Graff, L. A. (2015). The relationship among perceived stress, symptoms, and inflammation in persons with inflammatory bowel disease. The American journal of gastroenterology, 110(7), 1001. doi: 10.1038/ajg.2015.147 | None identified in June 2019 | |
| Gastrointestinal | Irritable bowel disease | Irritable Bowel Syndrome Cognitive Affective Scale | USA | 2017 | 15 item clinical tool to measure distinct cognitive-affective processes that may underlie physical and psychosocial distress associated with IBS. | 3: Pain catastrophization, visceral hypervigilance, and extraintestinal hypervigilance | Self-report | Concurrent validity and predictive validity have been demonstrated. | Ballou, S., & Keefer, L. (2017). Development of the Irritable Bowel Syndrome Cognitive Affective Scale: a brief self-report measure for clinical and research settings. European journal of gastroenterology & hepatology, 29(7), 849-854. http://dx.doi.org/10.1097/MEG.0000000000000872 | Unknown | Unknown | Contact: Sarah Ballou, sballou@bidmc.harvard.edu | None identified in June 2019 | None identified in June 2019 | ||
| Gastrointestinal | Irritable bowel syndrome | Irritable Bowel Syndrome Impact Scale | IBS-IS | USA | 2005 | A disease-specific questionnaire to capture the impact of irritable bowel syndrome (IBS) and its treatment on patients’ lives. | 5: Fatigue, impact on daily activities, sleep disturbance, emotional distress, eating habits | Self-report | Construct validity and discriminant validity have been demonstrated. | Longstreth, G. F., Bolus, R., Naliboff, B., Chang, L., Kulich, K. R., Carlsson, J., ... & Wiklund, I. K. (2005). Impact of irritable bowel syndrome on patients' lives: development and psychometric documentation of a disease-specific measure for use in clinical trials. European journal of gastroenterology & hepatology, 17(4), 411-420. https://ovidsp.tx.ovid.com/sp-3.33.0b/ovidweb.cgi?QS2=434f4e1a73d37e8c3… | Unknown | Unknown | Contact: Dr George F. Longstreth, George.F.Longstreth@kp.org | Moser, G., Trägner, S., Gajowniczek, E. E., Mikulits, A., Michalski, M., Kazemi-Shirazi, L., ... & Miehsler, W. (2013). Long-term success of GUT-directed group hypnosis for patients with refractory irritable bowel syndrome: a randomized controlled trial. The American journal of gastroenterology, 108(4), 602. doi: 10.1038/ajg.2013 | None identified in June 2019 | |
| Gastrointestinal | Irritable bowel syndrome | Irritable Bowel Syndrome Quality Of Life Questionnaire | IBSQoL | USA | 1997 | A measure of the impact of irritable bowel syndrome (IBS) on dimensions of quality of life. | 10: Emotional health, mental health, health belief, sleep, energy, physical functioning, diet, social role, physical role, and sexual relations | Self-report | Construct validity has been demonstrated. | Hahn, B. A., Kirchdoerfer, L. J., Fullerton, S., & Mayer, E. (1997). Evaluation of a new quality of life questionnaire for patients with irritable bowel syndrome. Alimentary pharmacology & therapeutics, 11(3), 547-552. https://doi.org/10.1046/j.1365-2036.1997.00168.x | Unknown | Unknown | Contact: B. A. Hahn - Email unavailable | Böhn, L., Störsrud, S., Törnblom, H., Bengtsson, U., & Simrén, M. (2013). Self-reported food-related gastrointestinal symptoms in IBS are common and associated with more severe symptoms and reduced quality of life. The American journal of gastroenterology, 108(5), 634. doi: 10.1038/ajg.2013.105 | None identified in June 2019 | |
| Gastrointestinal | Irritable bowel syndrome | Irritable Bowel Syndrome Questionnaire | IBSQ (or IBS-HRQOL) | Canada | 1998 | A 26 item quality of life measure for irritable bowel syndrome. | 4: Bowel symptoms, fatigue, activity limitations, and emotional dysfunction | Self-report | Factor analysis was used for validation. | Wong, E., Guyatt, G. H., Cook, D. J., Griffith, L. E., & Irvine, E. J. (1998). Development of a questionnaire to measure quality of life in patients with irritable bowel syndrome. The European journal of surgery. Supplement. Acta chirurgica. Supplement, (583), 50-56. https://europepmc.org/abstract/med/10027673 | Unknown | Unknown | Contact information not available | None identified in June 2019 | None identified in June 2019 | |
| Gastrointestinal | Irritable bowel syndrome | Irritable Bowel Syndrome-36 | IBS-36 | Canada | 2002 | A 36 item quality of life instrument for patients with irritable bowel syndrome. | 8: Food, symptoms, family relations, emotional impact, work/school/activities of daily living, social impact, sleep/fatigue, and sexual relations | Self-report | Factor analysis, convergent and divergent validity, and criterion validity have been demonstrated. | Groll, D., Vanner, S. J., Depew, W. T., DaCosta, L. R., Simon, J. B., Groll, A., ... & Paterson, W. G. (2002). The IBS-36: a new quality of life measure for irritable bowel syndrome. The American journal of gastroenterology, 97(4), 962. https://www.researchgate.net/profile/Dianne_Groll/publication/11368449_… | Unknown | Unknown | Contact: William G. Paterson, William.Paterson@kingstonhsc.ca | Lowe, C., Aiken, A., Day, A. G., Depew, W., & Vanner, S. J. (2017). Sham acupuncture is as efficacious as true acupuncture for the treatment of IBS: A randomized placebo controlled trial. Neurogastroenterology & Motility, 29(7), e13040. https://doi.org/10.1111/nmo.13040 | None identified in June 2019 | |
| Gastrointestinal | Irritable bowel syndrome | Irritable Bowel Syndrome–Quality Of Life | IBS-QOL | USA | 1998 | The IBS-QOL is a self-report quality of life measure specific to Irritable Bowel Syndrome (IBS) that can be used to assess the impact of IBS and its treatment. | 8: Dysphoria, interference with activity, body image, health worry, food avoidance, social reaction, sexual, relationships | Self-report | Confirmatory factor analysis and construct validity have been demonstrated. | Patrick, D. L., Drossman, D. A., Frederick, I. O., Dicesare, J., & Puder, K. L. (1998). Quality of life in persons with irritable bowel syndrome (development and validation of a new measure). Digestive diseases and sciences, 43(2), 400-411. https://link.springer.com/content/pdf/10.1023/A:1018831127942.pdf | Yes | Unknown | Contact: Information Resources Centre, Mapi Research Institute, mpemery@mapi.fr - or Donald L. Patrick, donald@u.washington.edu | Østgaard, H., Hausken, T., Gundersen, D., & El-Salhy, M. (2012). Diet and effects of diet management on quality of life and symptoms in patients with irritable bowel syndrome. Molecular medicine reports, 5(6), 1382-1390. https://doi.org/10.3892/mmr.2012.843 | None identified in June 2019 | Available in many languages including: Dutch, Chinese, German, French, Spanish, etc. |
| Gastrointestinal | Irritable bowel syndrome | Irritable Bowel Syndrome Severity Scoring System | IBS-SSS | UK | 1977 | This measure evaluates the intensity of Irritable Bowel Syndrome symptoms over a ten-day period. The Rome Foundation recommends the use of the original version AU2.0. | 5: Severity of abdominal pain, frequency of abdominal pain, severity of abdominal distension, dissatisfaction with bowel habits, interference with quality of life | Self-report | Sensitivity to change has been demonstrated. | Francis, C. Y., Morris, J., & Whorwell, P. J. (1997). The irritable bowel severity scoring system: a simple method of monitoring irritable bowel syndrome and its progress. Alimentary pharmacology & therapeutics, 11(2), 395-402. https://doi.org/10.1046/j.1365-2036.1997.142318000.x | Unknown | Unknown | Contact: P. J. Whorwell, Peter.Whorwell@manchester.ac.uk | Peckham, E. J., Relton, C., Raw, J., Walters, C., Thomas, K., Smith, C., ... & Said, E. (2014). Interim results of a randomised controlled trial of homeopathic treatment for irritable bowel syndrome. Homeopathy, 103(03), 172-177. https://doi.org/10.1016/j.homp.2014.05.001 | None identified in June 2019 | |
| Gastrointestinal | Irritable bowel syndrome or functional digestive disorders | Functional Digestive Disorders Quality Of Life Questionnaire | FDDQL | France, UK, Germany | 1999 | The Functional Digestive Disorders Quality of Life Questionnaire (FDDQL) is intended for evaluation of HRQoL in functional dyspepsia and IBS. | 8: Daily activities, diet, anxiety, sleep, discomfort, coping with disease, control of disease, stress | Self-report | Concurrent validity, discriminant validity, and factor analysis have been demonstrated. | Chassany, O., Marquis, P., Scherrer, B., Read, N. W., Finger, T., Bergmann, J. F., ... & Caulin, C. (1999). Validation of a specific quality of life questionnaire for functional digestive disorders. Gut, 44(4), 527-533 http://dx.doi.org/10.1136/gut.44.4.527 | Unknown | Unknown | Contact: Oliver Chassany, olivier.chassany@sls.aphp.fr | Azpiroz, F., Guyonnet, D., Donazzolo, Y., Gendre, D., Tanguy, J., & Guarner, F. (2014). Digestive Symptoms in Healthy People and Subjects With Irritable Bowel Syndrome. https://www.researchgate.net/profile/Denis_Guyonnet/publication/2638629… | None identified in June 2019 | Available in French, English and German. |
| Gastrointestinal | Paediatric Inflammatory Bowel Disease | IMPACT III | IMPACT III | Canada | 2002 | A measure of disease-related quality of life in children and adolescents with Inflammatory Bowel Disease (Crohn’s Disease and Ulcerative Colitis). Originally developed in 1999, refined in 2002 for IMPACT-II and now, IMPACT-III. | 6: Bowel, body image, functional/social impairment, emotional impairment, tests/treatments, systemic impairment | Self-report | Construct validity has been demonstrated. | Otley, A., Smith, C., Nicholas, D., Munk, M., Avolio, J., Sherman, P. M., & Griffiths, A. M. (2002). The IMPACT questionnaire: a valid measure of health-related quality of life in pediatric inflammatory bowel disease. Journal of pediatric gastroenterology and nutrition, 35(4), 557-563. https://ovidsp.dc2.ovid.com/sp-3.33.0b/ovidweb.cgi?QS2=434f4e1a73d37e8c… | Unknown | Unknown | Contact: Anthony Otley, arotley@is.dal.ca | Lee, D., Baldassano, R. N., Otley, A. R., Albenberg, L., Griffiths, A. M., Compher, C., ... & Grant, A. (2015). Comparative effectiveness of nutritional and biological therapy in North American children with active Crohn's disease. Inflammatory bowel diseases, 21(8), 1786-1793. https://doi.org/10.1097/MIB.0000000000000426 | None identified in June 2019 | Available in Croatian and Swedish. |
| Hearing and Vision | Auditory Disability | Amsterdam Inventory For Auditory Disability And Handicap | AIADH | The Netherlands | 1995 | A measure used to identify different factors in hearing disability. The measure includes 30 items. | 5: Distinction of sounds, auditory localisation, intelligibility in noise, intelligibility in quiet, detection of sounds | Self-report | Factor analysis has confirmed the 5 factors. Internal consistency and test-retest reliability have also been demonstrated. | Kramer, S. E., Kapteyn, T. S., Festen, J. M., & Tobi, H. (1995). Factors in subjective hearing disability. Audiology, 34(6), 311-320. Boeschen Hospers, J. M., Smits, N., Smits, C., Stam, M., Terwee, C. B., & Kramer, S. E. (2016). Reevaluation of the Amsterdam inventory for auditory disability and handicap using item response theory. Journal of Speech, Language, and Hearing Research, 59(2), 373-383. https://doi.org/10.3109/00206099509071921 | Unknown | Unknown | Contact information not available | McPhersonY, B., & Hormazabal, X. (2013). Self-reported hearing performance in workers exposed to solvents. Revista de Saúde Pública, 47, 86-93. https://www.scielosp.org/scielo.php?pid=S0034-89102013000100012&script=… | None identified in June 2019 | |
| Hearing and Vision | Cataract | Activities Of Daily Vision Scale | ADVS | USA | 1992 | The ADVS contains 22 items which examine the patient’s ability to perform an activity. | 5: Distance vision, near vision, glare disability, night driving, and daytime driving | Interviewer, telephone | Internal consistency, test-retest reliability, criterion validity, content validity, and factor analysis provided support for validation. | Mangione, C. M., Phillips, R. S., Seddon, J. M., Lawrence, M. G., Cook, E. F., Dailey, R., & Goldman, L. (1992). Development of the'Activities of Daily Vision Scale'. A measure of visual functional status. Medical care, 30(12), 1111-1126. https://europepmc.org/abstract/med/1453816 | Unknown | Unknown | Contact information not available | Fraser, M. L., Meuleners, L. B., Lee, A. H., Ng, J. Q., & Morlet, N. (2013). Vision, quality of life and depressive symptoms after first eye cataract surgery. Psychogeriatrics, 13(4), 237-243. https://doi.org/10.1111/psyg.12028 | None identified in June 2019 | |
| Hearing and Vision | Cataract | Cat-PROM5 | Cat-PROM5 | UK | 2018 | A short 5 item cataract patient reported outcome measure suitable for use in high-volume surgical environments. | Unidimensional | Self-report | Rasch and factor analyses with sequential item reduction, internal consistency and test-retest reliability have been demonstrated. | Sparrow, J. M., Grzeda, M. T., Frost, N. A., Johnston, R. L., Liu, C. S. C., Edwards, L., ... & Donovan, J. L. (2018). Cat-PROM5: a brief psychometrically robust self-report questionnaire instrument for cataract surgery. Eye, 32(4), 796. https://doi.org/10.1038/eye.2018.1 | Unknown | Unknown | Contact: J M Sparrow | Roberts, H. W., Wagh, V. K., Sullivan, D. L., Hidzheva, P., Detesan, D. I., Heemraz, B. S., ... & O'Brart, D. P. (2019). A randomized controlled trial comparing femtosecond laser–assisted cataract surgery versus conventional phacoemulsification surgery. Journal of Cataract & Refractive Surgery, 45(1), 11-20. https://doi.org/10.1016/j.jcrs.2018.08.033 | None identified in June 2019 | |
| Hearing and Vision | Cataract | Visual Disability Assessment | VDA | Australia | 1998 | The Visual Disability Assessment (VDA) is an 18 item measure specifically designed for assessing the outcome of cataract surgery with respect to visual disability. | 4: Mobility related disability, distance/lighting/reading related disability, near and related tasks visual disability, and overall index of visual disability. | Interviewer | Test-retest reliability, interobserver reliability, internal consistency, content validity, and principal components analysis have been demonstrated. | Pesudovs, K., & Coster, D. J. (1998). An instrument for assessment of subjective visual disability in cataract patients. British Journal of Ophthalmology, 82(6), 617-624. http://dx.doi.org/10.1136/bjo.82.6.617 | Unknown | Unknown | http://www.pesudovs.com/konrad/Instrument.html | Khadka, J., Gothwal, V. K., McAlinden, C., Lamoureux, E. L., & Pesudovs, K. (2012). The importance of rating scales in measuring patient-reported outcomes. Health and Quality of Life Outcomes, 10(1), 80. https://doi.org/10.1186/1477-7525-10-80 | None identified in June 2019 | |
| Hearing and Vision | Cataract | Visual Function Index | VF-14 | International | 1994 | The Vision Function Index (VF-14) is a self-report questionnaire designed to measure functional impairment caused by cataract. | Unidimensional | Self-report | Internal consistency, convergent validity, and responsiveness to change have been demonstrated. | Steinberg, E. P., Tielsch, J. M., Schein, O. D., Javitt, J. C., Sharkey, P., Cassard, S. D., ... & Steinwachs, D. M. (1994). The VF-14: an index of functional impairment in patients with cataract. Archives of Ophthalmology, 112(5), 630-638. Cassard, S. D., Patrick, D. L., Damiano, A. M., Legro, M. W., Tielsch, J. M., Diener-West, M., ... & Steinberg, E. P. (1995). Reproducibility and responsiveness of the VF-14: an index of functional impairment in patients with cataracts. Archives of Ophthalmology, 113(12), 1508-1513. doi:10.1001/archopht.1995.01100120038005 | Unknown | Unknown | https://www.themedicaleyecenter.com/wp-content/uploads/2018/05/Cataract… | Tipotsch-Maca, S. M., Varsits, R. M., Ginzel, C., & Vecsei-Marlovits, P. V. (2016). Effect of a multimedia-assisted informed consent procedure on the information gain, satisfaction, and anxiety of cataract surgery patients. Journal of Cataract & Refractive Surgery, 42(1), 110-116. https://doi.org/10.1016/j.jcrs.2015.08.019 | None identified in June 2019 | The VF-14 has been validated for use in Danish and Spanish. |
| Hearing and Vision | Eye diseases | National Eye Institute Visual Function Questionnaire | NEI-VFQ-25, or VFQ-25 | USA | 2001 | The VFQ-25 is a 25 item version of the 51 item National Eye Institute Visual Function Questionnaire (NEI-VFQ). The longer version contains 51 questions which represent 13 different sub-scales. | 13: General health, general vision, ocular pain, near activities, distance activities, social functioning, mental health, role difficulties, dependency, driving, colour vision, peripheral vision, VFQ-25 composite | Interviewer | Reliability, validity and responsiveness have been demonstrated. | Mangione, C. M., Lee, P. P., Gutierrez, P. R., Spritzer, K., Berry, S., & Hays, R. D. (2001). Development of the 25-list-item national eye institute visual function questionnaire. Archives of ophthalmology, 119(7), 1050-1058. doi: 10.1001/archopht.119.7.1050 | Yes | No | https://www.rand.org/health-care/surveys_tools/vfq.html | Abe, R. Y., Diniz-Filho, A., Costa, V. P., Gracitelli, C. P., Baig, S., & Medeiros, F. A. (2016). The impact of location of progressive visual field loss on longitudinal changes in quality of life of patients with glaucoma. Ophthalmology, 123(3), 552-557. https://doi.org/10.1016/j.ophtha.2015.10.046 | None identified in June 2019 | The VFQ-25 has been translated into Spanish and Greek. |
| Hearing and Vision | Eye disorders | Impact Of Vision Impairment | IVI | Australia | 2000 | A measure of participation in daily activities and determine the outcome of low-vision rehabilitation on quality of life in people with low vision. | 3: Emotional well-being, reading and accessing information, and mobility and independence subscales | Self-report, Interviewer | Rasch analysis and confirmatory factor analysis has provided support for the 28-item version of the IVI. Internal consistency and criterion validity have also been demonstrated. | Hassell, J. B., Weih, L. M., & PhD, J. K. (2000). A measure of handicap for low vision rehabilitation: the impact of vision impairment profile. Clinical & experimental ophthalmology, 28(3), 156-161. https://doi.org/10.1046/j.1442-9071.2000.00312.x Lamoureux, E. L., Pallant, J. F., Pesudovs, K., Hassell, J. B., & Keeffe, J. E. (2006). The Impact of Vision Impairment Questionnaire: an evaluation of its measurement properties using Rasch analysis. Investigative ophthalmology & visual science, 47(11), 4732-4741. Lamoureux, E. L., Pallant, J. F., Pesudovs, K., Rees, G., Hassell, J. B., & Keeffe, J. E. (2007). The impact of vision impairment questionnaire: an assessment of its domain structure using confirmatory factor analysis and Rasch analysis. Investigative Ophthalmology & Visual Science, 48(3), 1001-1006. doi: 10.1167/iovs.06-0361 | Yes | Unknown | https://www.cera.org.au/pro-questionnaires/#ivi1 | Selivanova, A., Fenwick, E., Man, R., Seiple, W., & Jackson, M. L. (2019). Outcomes After Comprehensive Vision Rehabilitation Using Vision-related Quality of Life Questionnaires: Impact of Vision Impairment and National Eye Institute Visual Functioning Questionnaire. Optometry and Vision Science, 96(2), 87-94. doi: 10.1097/OPX.0000000000001327 | None identified in June 2019 | The IVI has been translated into a number of languages, including Chinese and German. |
| Hearing and Vision | Eye disorders | Vision Quality Of Life Index | VisQoL | Australia | 2005 | The (VisQoL) is a 6 item vision-related utility instrument for the health economic evaluation of eye care and rehabilitation programs. | Unidimensional | Self-report | Exploratory factor analysis, item response theory, and structural equation modelling analyses were used for validation. | Misajon, R., Hawthorne, G., Richardson, J., Barton, J., Peacock, S., Iezzi, A., & Keeffe, J. (2005). Vision and quality of life: the development of a utility measure. Investigative ophthalmology & visual science, 46(11), 4007-4015. doi :10.1167/iovs.04-1389 | Yes | Unknown | https://www.cera.org.au/pro-questionnaires/#b_ivi | Finger, R. P., Fenwick, E., Hirneiss, C. W., Hsueh, A., Guymer, R. H., Lamoureux, E. L., & Keeffe, J. E. (2013). Visual impairment as a function of visual acuity in both eyes and its impact on patient reported preferences. PloS one, 8(12), e81042. https://doi.org/10.1371/journal.pone.0081042 | None identified in June 2019 | The VisQoL has been translated into German and Telugu/Hindi. |
| Hearing and Vision | Eye disorders, older adults | Visual Activities Questionnaire | VAQ | USA | 1992 | The Visual Activities Questionnaire (VAQ) is designed to assess visual performance problems encountered in everyday life. The VAQ is especially designed for the older adult population, who are at a higher risk for ocular disease and visual impairment. | 8: Peripheral vision, acuity, visual search, depth, colour, adaptation, glare, and processing speed | Self-report | Factor analysis has provided support for the content validity and factor structure of the scale. Internal consistency and criterion validity for the scale have also been demonstrated. | Sloane, M. E., Ball, K., Owsley, C., Bruni, J. R., & Roenker, D. L. (1992). The Visual Activities Questionnaire: developing an instrument for assessing problems in everyday visual tasks. Technical Digest, Noninvasive Assessment of the Visual System, 1, 26-29. | No | No | https://www.uab.edu/medicine/ophthalmology/images/research/VisualActivi… | Musch, D. C., Niziol, L. M., Janz, N. K., & Gillespie, B. W. (2019). Trends in and Predictors of Depression Among Participants in the Collaborative Initial Glaucoma Treatment Study (CIGTS). American journal of ophthalmology, 197, 128-135. https://doi.org/10.1016/j.ajo.2018.09.015 | None identified in June 2019 | |
| Hearing and Vision | Hearing loss | Spatial Hearing Questionnaire | SHQ | USA | 2009 | The Spatial Hearing Questionnaire consists of 24 items to assess the difficulties faced by patients with hearing loss. | 3: Localization, speech in noise and music in quiet, speech in quiet | Self-report | Internal consistency reliability, construct validity, and factor analysis have been demonstrated. | Tyler, R. S., Perreau, A. E., & Ji, H. (2009). The validation of the spatial hearing questionnaire. Ear and hearing, 30(4), 466. doi: 10.1097/AUD.0b013e3181a61efe | Unknown | Unknown | Contact: Richard Tyler | Zhang, J., Tyler, R., Ji, H., Dunn, C., Wang, N., Hansen, M., & Gantz, B. (2015). Speech, Spatial and Qualities of Hearing Scale (SSQ) and Spatial Hearing Questionnaire (SHQ) changes over time in adults with simultaneous cochlear implants. American journal of audiology, 24(3), 384-397. https://doi.org/10.1044/2015_AJA-14-0074 | None identified in June 2019 | |
| Hearing and Vision | Hearing loss treatment | Glasgow Hearing Aid Benefit Profile | GHABP | UK | 1999 | A measure used to assess the efficacy and effectiveness of rehabilitation services for hearing-impaired adults. | 6: Preintervention disability, handicap, reported hearing aid use, reported benefit, satisfaction, and residual disability | Self-report | Criterion validity, internal consistency and test-retest reliability have been demonstrated. | Gatehouse, S. (1999). Glasgow hearing aid benefit profile: derivation and validation of. J Am Acad Audiol, 10(80), 103. https://pdfs.semanticscholar.org/516f/eb70909be48f7c463f8ac832951901374… | No | No | https://eprovide.mapi-trust.org/instruments/glasgow-hearing-aid-benefit… | Polanski, J. F., Soares, A. D., Dos Santos, Z. M., & Cruz, O. M. (2016). Active middle-ear implant fixation in an unusual place: clinical and audiological outcomes. The Journal of Laryngology & Otology, 130(4), 404-407. https://doi.org/10.1017/S0022215116000712 | None identified in June 2019 | |
| Hearing and Vision | Refractive error | National Eye Institute Refractive Error Quality Of Life Instrument | NEI-RQL-42 | USA | 2003 | The National Eye Institute Refractive Error Quality of Life Instrument (NEI-RQL-42) is a 42 item measure to assess the impact of refractive error and its correction on day-to-day life. | 13: Clarity of vision, expectations, near vision, far vision, diurnal fluctuations, activity limitations, glare, symptoms, dependence on correction, worry, suboptimal correction, appearance, and satisfaction with correction. | Self-report | Internal consistency, test-retest reliability, item discrimination, and construct validity have been demonstrated. | Hays, R. D., Mangione, C. M., Ellwein, L., Lindblad, A. S., Spritzer, K. L., McDonnell, P. J., & NEI-RQL Research Group. (2003). Psychometric properties of the National Eye Institute–refractive error quality of life instrument. Ophthalmology, 110(12), 2292-2301. https://doi.org/10.1016/j.ophtha.2002.07.001 | Yes | No | https://www.rand.org/health-care/surveys_tools.html | Jonker, S. M., Bauer, N. J., Makhotkina, N. Y., Berendschot, T. T., van den Biggelaar, F. J., & Nuijts, R. M. (2015). Comparison of a trifocal intraocular lens with a+ 3.0 D bifocal IOL: results of a prospective randomized clinical trial. Journal of Cataract & Refractive Surgery, 41(8), 1631-1640. https://doi.org/10.1016/j.jcrs.2015.08.011 | None identified in June 2019 | |
| Hearing and Vision | Refractive error, Refractive surgery | Refractive Status And Vision Profile | RSVP | USA | 2000 | The Refractive Status and Vision Profile (RSVP) is a 42 item questionnaire for the measurement of patient-reported outcomes of refractive surgery and other treatments for refractive error. | 8: Concerns, driving, expectations, physical/social functioning, symptoms, optical problems, glare, problems with corrective lenses. | Self-report | Internal consistency, test-retest reliability, criterion validity, discriminant validity, content validity, and construct validity have been demonstrated. | Schein, O. D. (2000). The measurement of patient-reported outcomes of refractive surgery: the refractive status and vision profile. Transactions of the American Ophthalmological Society, 98, 439. Schein, O. D., Vitale, S., Cassard, S. D., & Steinberg, E. P. (2001). Patient outcomes of refractive surgery: the refractive status and vision profile. Journal of Cataract & Refractive Surgery, 27(5), 665-673. https://doi.org/10.1016/S0886-3350(01)00844-6 | Yes | Unknown | Johns Hopkins University | Pesudovs, K. (2018). Influence of refractive surgery complications on quality of life. In Management of complications in refractive surgery (pp. 13-19). Springer, Cham. https://link.springer.com/chapter/10.1007/978-3-540-37584-5_2 | None identified in June 2019 | The RSVP has been translated into 8 different languages. |
| Hearing and Vision | Visual impairment | Low Vision Quality-Of-Life Questionnaire | LVQOL, LVQOL-25 | UK | 2000 | A 25 item vision-specific quality-of-life assessment tool to be used in a clinical setting to evaluate low-vision rehabilitation strategy and management. | 4: Mobility, distance vision, and lighting, adjustment, reading and fine work, and activities of daily living | Interviewer, self-report, telephone | Internal consistency, test-retest reliability, and cross-sectional and longitudinal construct validity have been demonstrated. | Wolffsohn, J. S., & Cochrane, A. L. (2000). Design of the low vision quality-of-life questionnaire (LVQOL) and measuring the outcome of low-vision rehabilitation. American journal of ophthalmology, 130(6), 793-802. https://doi.org/10.1016/S0002-9394(00)00610-3 ; De Boer, M. R., Terwee, C. B., de Vet, H. C., Moll, A. C., Völker-Dieben, H. M., & van Rens, G. H. (2006). Evaluation of cross-sectional and longitudinal construct validity of two vision-related quality of life questionnaires: the LVQOL and VCM1. Quality of Life Research, 15(2), 233-248. https://link.springer.com/article/10.1007/s11136-005-1524-9 | Yes | Yes, fees may apply | Mapi Research Trust. | Omar, Rokiah, Mohd Harimi Abd Rahman, Victor Feizal Knight, Mushawiahti Mustaphal, and Zainora Mohammed. "Mental health state and quality of life questionnaire in low vision assessment: a case report." BMC research notes 7, no. 1 (2014): 667. https://doi.org/10.1186/1756-0500-7-667 | None identified in June 2019 | |
| Hearing and Vision | Visual impairment, Cataract | Vision Core Module | VCM1 | UK | 1998 | The Vision Core Module-1 (VCM-1) is a 10 item questionnaire that provides a subjective measure of concern regarding vision, with scores ranging from 0.0 (best score) to 5.0 (worst score) with 50 intervals. | Unidimensional | Interviewer, self-report, telephone | Principal Components Analysis and Rasch analysis has provided support for the scale. Test-retest reliability and construct validity has also been demonstrated. | Frost, N. A., Sparrow, J. M., Durant, J. S., Donovan, J. L., Peters, T. J., & Brookes, S. T. (1998). Development of a questionnaire for measurement of vision-related quality of life. Ophthalmic epidemiology, 5(4), 185-210. https://doi.org/10.1076/opep.5.4.185.4191 ; Lamoureux, Ecosse L., Konrad Pesudovs, Julie F. Pallant, Gwyn Rees, Jennifer B. Hassell, Lynda E. Caudle, and Jill E. Keeffe. "An evaluation of the 10-item vision core measure 1 (VCM1) scale (the Core Module of the Vision-Related Quality of Life scale) using Rasch analysis." Ophthalmic epidemiology 15, no. 4 (2008): 224-233. https://doi.org/10.1080/09286580802256559 | Unknown | Unknown | AstraZeneca | Jalil, A., Yin, K., Coyle, L., Harper, R., & Jones, N. P. (2012). Vision-related quality of life and employment status in patients with uveitis of working age: a prospective study. Ocular immunology and inflammation, 20(4), 262-265. https://doi.org/10.3109/09273948.2012.684420 | None identified in June 2019 | |
| Infectious | HIV | Functional Assessment Of HIV Infection | FAHI | USA | 1996 | A quality of life measure in HIV, developed from the Functional Assessment of Cancer Therapy General (FACT-G). | 5: Physical well-being, social/family well-being, emotional well-being, relationship with physician, functional well-being | Self-report | Concurrent validity has been demonstrated. | Cella, D. F., McCain, N. L., Peterman, A. H., Mo, F., & Wolen, D. (1996). Development and validation of the Functional Assessment of Human Immunodeficiency Virus Infection (FAHI) quality of life instrument. Quality of Life Research, 5(4), 450-463. https://link.springer.com/content/pdf/10.1007/BF00449920.pdf | Unknown | Unknown | Contact: D. F. Cella | Mutumba, M., Bauermeister, J. A., Harper, G. W., Musiime, V., Lepkowski, J., Resnicow, K., & Snow, R. C. (2017). Psychological distress among Ugandan adolescents living with HIV: Examining stressors and the buffering role of general and religious coping strategies. Global public health, 12(12), 1479-1491. https://doi.org/10.1080/17441692.2016.1170871 | None identified in June 2019 | Available in Spanish. |
| Infectious | HIV | HIV Disability Questionnaire | HDQ | Canada | 2014 | This measure identifies the presence, severity, and episodic nature of disability experienced by adults living with HIV. | 6: Physical symptoms and impairments, cognitive symptoms and impairments, mental and emotional health symptoms and impairments, uncertainty, difficulties with day-to-day activities, challenges to social inclusion | Self-report | Confirmatory factor analysis and construct validity have been demonstrated. | O’Brien, K. K., Bayoumi, A. M., Bereket, T., Swinton, M., Alexander, R., King, K., & Solomon, P. (2013). Sensibility assessment of the HIV Disability Questionnaire. Disability and rehabilitation, 35(7), 566-577. https://doi.org/10.3109/09638288.2012.702848 ; O'Brien, K. K., Solomon, P., & Bayoumi, A. M. (2014). Measuring disability experienced by adults living with HIV: assessing construct validity of the HIV Disability Questionnaire using confirmatory factor analysis. BMJ open, 4(8), e005456. http://dx.doi.org/10.1136/bmjopen-2014-005456 | Yes | Unknown | Contact: McMaster Industry Liaison Office at McMaster University, milo@mcmaster.ca | O'Brien, K. K., Bayoumi, A. M., Solomon, P., Tang, A., Murzin, K., Carusone, S. C., ... & Davis, A. M. (2016). Evaluating a community-based exercise intervention with adults living with HIV: protocol for an interrupted time series study. BMJ open, 6(10), e013618. doi:10.1136/bmjopen-2016-013618 | None identified in June 2019 | |
| Infectious | HIV | HIV Overview Of Problems - Evaluation System | HOPES | USA | 1992 | A measure of the quality of life of HIV infected persons. | 5: Physical, psychosocial, medical interaction, sexual and significant other/partners domains in addition to a global score | Self-report | Construct validity, criterion-related validity, and factor analysis have been demonstrated. | Schag, C. A. C., Ganz, P. A., Kahn, B., & Petersen, L. (1992). Assessing the needs and quality of life of patients with HIV infection: development of theHIVOverview ofProblems-EvaluationSystem (HOPES). Quality of life Research, 1(6), 397-413. https://link.springer.com/content/pdf/10.1007/BF00704434.pdf | Yes | Unknown | Contact: C. A. Coscarelli Schag | None identified in June 2019 | None identified in June 2019 | |
| Infectious | HIV | HIV Symptom Index | HIV-SI or SDM | USA | 2001 | 20 item measure of HIV symptoms for clinical management, patient-oriented research and adverse drug reporting. | Unidimensional | Self-report | Construct validity has been demonstrated. | Justice, A. C., Holmes, W., Gifford, A. L., Rabeneck, L., Zackin, R., Sinclair, G., ... & Cohn, S. E. (2001). Development and validation of a self-completed HIV symptom index. Journal of clinical epidemiology, 54(12), S77-S90. https://doi.org/10.1016/S0895-4356%2801%2900449-8 | No | Unknown | Contact: Amy Justice, Amy.Justice@med.va.gov | Toth, M., Messer, L. C., & Quinlivan, E. B. (2013). Barriers to HIV care for women of color living in the Southeastern US are associated with physical symptoms, social environment, and self-determination. AIDS patient care and STDs, 27(11), 613-620. https://doi.org/10.1089/apc.2013.0030 | None identified in June 2019 | |
| Infectious | HIV | HIV/AIDS-Targeted Quality Of Life | HAT-QoL | USA | 1998 | A measure of the quality of life of HIV/AIDS Infected Persons. | 9: Overall function, sexual function, disclosure worries, health worries, financial worries, HIV mastery, life satisfaction, medication concerns, provider trust | Self-report | Factor analysis and construct validity have been demonstrated. | Holmes, W. C., & Shea, J. A. (1998). A new HIV/AIDS-targeted quality of life (HAT-QoL) instrument: development, reliability, and validity. Medical care, 138-154. https://www.jstor.org/stable/3767177 | Unknown | Unknown | Contact: William Holmes, holmeswc@mail.med.upenn.edu | Lee, M., Nezu, A. M., & Nezu, C. M. (2014). Positive and negative religious coping, depressive symptoms, and quality of life in people with HIV. Journal of Behavioral Medicine, 37(5), 921-930. https://link.springer.com/article/10.1007/s10865-014-9552-y | None identified in June 2019 | |
| Infectious | HIV | Living With HIV Scale | LWH | USA | 1998 | assesses patients’ experience of living with HIV as well as HIV-specific health related quality of life. | 2 higher-order domains and nine sub-domains: HIV reverence, cherishing the environment, coveting time, resolving spiritual issues, HIV struggles, avoiding the fear zone, loss, body image, juggling of treatment and adverse effects, independence, death calculations | Self-report | Factor analysis, construct validity, and discriminant validity have been demonstrated. | Holzemer, W. L., Spicer, J. G., Wilson, H. S., Kemppainen, J. K., & Coleman, C. (1998). Validation of the quality of life scale: living with HIV. Journal of advanced Nursing, 28(3), 622-630. https://onlinelibrary.wiley.com/doi/pdf/10.1046/j.1365-2648.1998.00800.x | Unknown | Unknown | Contact: William L. Holzemer, holzemer@rutgers.edu | None identified in June 2019 | None identified in June 2019 | |
| Infectious | HIV | Multidimensional Quality Of Life Questionnaire For HIV/AIDS | MQOL-HIV | USA | 1997 | A measure that provides a comprehensive assessment of quality of life in people who are HIV-positive. The MQOL-HIV consists of 40 items. | 10: Mental health, physical health, physical functioning, social functioning, social support, cognitive functioning, financial status, partner intimacy, sexual functioning and medical care | Self-report | Construct validity has been demonstrated. | Smith, K. W., Swislow, L., Avis, N. E., & Mayer, K. H. (1997). Use of the MQoL-HIV with asymptomatic HIV-positive patients. Quality of Life Research, 6(6), 555-560. https://link.springer.com/content/pdf/10.1023/A:1018412216638.pdf | Unknown | Unknown | Contact: Kevin Smith, kevins@neri.org | Nahas, G., Côté, J., Godin, G., Otis, J., & Miranda, J. (2015). Social Support: Moderator or Mediator Effect on Quality of Life of Persons Living With HIV/AIDS?. Journal of HIV/AIDS & Social Services, 14(3), 319-336. https://doi.org/10.1080/15381501.2014.919244 | None identified in June 2019 | |
| Infectious | HIV-infected adults on NNRTI-based therapy | Medical Outcomes Study HIV Health Survey | MOS-HIV | USA | 1991 | A measure of patient outcomes in clinical trials and other studies of people with HIV/AIDS. | 11: Overall health, physical function, role function, social function, cognitive function, pain, mental health, energy/fatigue, health distress, quality of life, health transition | Self-report | Convergent and discriminant validity have been demonstrated. | Wu, A. W., Rubin, H. R., Mathews, W. C., Ware Jr, J. E., Brysk, L. T., Hardy, W. D., ... & Richman, D. D. (1991). A health status questionnaire using 30 items from the Medical Outcomes Study. Medical care, 786-798. https://www.jstor.org/stable/3766106 | Yes | Unknown | Contact: Albert Wu | Keltner, J. R., Vaida, F., Ellis, R. J., Moeller-Bertram, T., Fitzsimmons, C., Duarte, N. A., ... & Simpson, D. M. (2012). Health-Related Quality of Life ‘Well-Being'in HIV Distal Neuropathic Pain is More Strongly Associated with Depression Severity than with Pain Intensity. Psychosomatics, 53(4), 380-386. https://dx.doi.org/10.1016%2Fj.psym.2012.05.002 | None identified in June 2019 | |
| Infectious | Influenza | Influenza Intensity And Impact Questionnaire | FluiiQ | USA and Australia | 2011 | A measure of the symptoms and impact of influenza on individuals with influenza-like illness. Derived from the Influenza Symptom Severity Scale (ISS) and the Influenza Impact Wellbeing Scale (IIWS). | 2: Symptoms (systemic, respiratory, all), Impact (daily activities, emotions, other people) | Self-report | Confirmatory factor analysis, construct validity, convergence and discriminant validity have been demonstrated. | Osborne, R. H., Norquist, J. M., Elsworth, G. R., Busija, L., Mehta, V., Herring, T., & Gupta, S. B. (2011). Development and validation of the influenza intensity and impact questionnaire (FluiiQ™). Value in health, 14(5), 687-699. https://doi.org/10.1016/j.jval.2010.12.005 | Yes | Unknown | https://www.measuredsolutions.com.au/about-flu-iiq | van Essen, G. A., Beran, J., Devaster, J. M., Durand, C., Duval, X., Esen, M., ... & Kovac, M. (2014). Influenza symptoms and their impact on elderly adults: randomised trial of AS 03‐adjuvanted or non‐adjuvanted inactivated trivalent seasonal influenza vaccines. Influenza and other respiratory viruses, 8(4), 452-462. https://onlinelibrary.wiley.com/doi/pdf/10.1111/irv.12245 | None identified in June 2019 | Available in over 50 languages. |
| Infectious | Influenza | Influenza Patient-Reported Outcome | Flu-PRO | USA, UK, Mexico, and South America | 2018 | A patient-reported outcome measure to assess influenza symptoms | 6: Nose, throat, eyes, chest/respiratory, gastrointestinal, and body/systemic; With a higher order factor representing symptom severity overall | Self-report | Convergent and known group validity have been demonstrated. | Powers, J. H., Guerrero, M. L., Leidy, N. K., Fairchok, M. P., Rosenberg, A., Hernández, A., ... & Danaher, P. J. (2015). Development of the Flu-PRO: a patient-reported outcome (PRO) instrument to evaluate symptoms of influenza. BMC infectious diseases, 16(1), 1. https://doi.org/10.1186/s12879-015-1330-0 ; Powers III, J. H., Bacci, E. D., Guerrero, M. L., Leidy, N. K., Stringer, S., Kim, K., ... & Arnold, J. C. (2018). Reliability, validity, and responsiveness of InFLUenza patient-reported outcome (FLU-PRO©) scores in influenza-positive patients. Value in Health, 21(2), 210-218. https://doi.org/10.1016/j.jval.2017.04.014 | Yes | Unknown | Contact: John Powers, john.powers@nih.gov | Han, A., Poon, J. L., Powers, J. H., Leidy, N. K., Yu, R., & Memoli, M. J. (2018). Using the Influenza Patient-reported Outcome (FLU-PRO) diary to evaluate symptoms of influenza viral infection in a healthy human challenge model. BMC infectious diseases, 18(1), 353. https://doi.org/10.1186/s12879-018-3220-8 | None identified in June 2019 | |
| Injuries and Trauma | Brain injury | Brain Injury Community Rehabilitation Outcome | BICRO | UK | 1998 | A 39 item measure assessing function and participation in patients with acquired brain injury who have returned to live in the community. Evaluation for each item is made on the basis of before and after the injury. Suitable for patients with some cognitive impairment due to their injury. | 8: Personal care, psychological, socializing, self-organization, mobility, productive employment, family contact (for siblings/parents and for children/partner) | Self-report, care-giver proxy | Principal component analysis, construct and criterion validity, internal consistency, and test-retest reliability have been demonstrated. | Powell, J. H., Beckers, K., & Greenwood, R. J. (1998). Measuring progress and outcome in community rehabilitation after brain injury with a new assessment instrument—the BICRO-39 scales. Archives of physical medicine and rehabilitation, 79(10), 1213-1225. https://www.archives-pmr.org/article/S0003-9993(98)90265-9/pdf | Yes | Unknown | http://www.bicro.co.uk/ | Williams, G., & Willmott, C. (2012). Higher levels of mobility are associated with greater societal participation and better quality-of-life. Brain injury, 26(9), 1065-1071. https://doi.org/10.3109/02699052.2012.667586 | None identified in June 2019 | |
| Injuries and Trauma | Brain injury | Community Integration Questionnaire | CIQ | USA | 1994 | A 15 item measure of an individual's integration into various aspects of life following traumatic brain injury. It has also been used for patients experiencing other trauma or serious health conditions, including spinal cord injury and stroke. | 3: Home competency, social integration and productive activity | Self-report, family member proxy | Principal component analysis, concurrent validity, known group difference have been demonstrated. | Willer, B., Ottenbacher, K. J., & Coad, M. L. (1994). The community integration questionnaire. A comparative examination. American journal of physical medicine & rehabilitation, 73(2), 103-111. https://europepmc.org/abstract/med/8148099 ; See also: Sander, A. M., Fuchs, K. L., High Jr, W. M., Hall, K. M., Kreutzer, J. S., & Rosenthal, M. (1999). The Community Integration Questionnaire revisited: an assessment of factor structure and validity. Archives of physical medicine and rehabilitation, 80(10), 1303-1308. https://www.archives-pmr.org/article/S0003-9993(99)90034-5/pdf | Yes | No | Contact: B Willer, bswiller@buffalo.edu, see: http://www.tbims.org/combi/ciq/ | Ng, S. S., Chan, D. Y., Chan, M. K., & Chow, K. K. (2013). Long-term efficacy of occupational lifestyle redesign programme for strokes. Hong Kong Journal of Occupational Therapy, 23(2), 46-53. https://doi.org/10.1016/j.hkjot.2013.09.001 | None identified in June 2019 | |
| Injuries and Trauma | Brain injury | Neurobehavioral Symptom Inventory | NSI | USA | 2013 | Originally developed in 1995 as a symptom checklist for mild-traumatic brain injury, it has been more recently validated. The 22 item NSI is able to cluster symptoms into 3-4 categories. | 3-4: Somatic/sensory, affective, and cognitive symptoms | Self-report | External validity (correlation with other measures) and internal consistency reliability have been demonstrated. | King, P. R., Donnelly, K. T., Donnelly, J. P., Dunnam, M., Warner, G., Kittleson, C. J., ... & Meier, S. T. (2012). Psychometric study of the Neurobehavioral Symptom Inventory. Journal of Rehabilitation Research & Development, 49(6). http://dx.doi.org/10.1682/JRRD.2011.03.0051 ; See alsoCicerone, K. D., & Kalmar, K. (1995). Persistent postconcussion syndrome: the structure of subjective complaints after mild traumatic brain injury. The Journal of Head Trauma Rehabilitation. | Unknown | Unknown | Contact: P King, Paul.King2@va.gov | Schiehser, D. M., Twamley, E. W., Liu, L., Matevosyan, A., Filoteo, J. V., Jak, A. J., ... & Delano-Wood, L. (2015). The relationship between postconcussive symptoms and quality of life in veterans with mild to moderate traumatic brain injury. Journal of Head Trauma Rehabilitation, 30(4), E21-E28. doi: 10.1097/HTR.0000000000000065 | None identified in June 2019 | |
| Injuries and Trauma | Brain injury | Quality Of Life After Brain Injury Instrument | QOLIBRI | Australia, Belgium, Finland,, France, Germany, Italy, the Netherlands, the UK, and the USA | 2010 | A 37 item measure of quality of life in patients who have experienced traumatic brain injury, it has also been recently validated for stroke patients. | 6: Cognition, self, daily life and autonomy, social relationships, emotions, physical problems | Self-report, proxy | Exploratory factor analysis/confirmatory factor analysis, construct validity, internal consistency and test-retest reliability have been demonstrated. | Von Steinbüchel, N., Wilson, L., Gibbons, H., Hawthorne, G., Höfer, S., Schmidt, S., ... & Von Wild, K. (2010). Quality of Life after Brain Injury (QOLIBRI): scale development and metric properties. Journal of neurotrauma, 27(7), 1167-1185. https://doi.org/10.1089/neu.2009.1076 Von Steinbüchel, N., Wilson, L., Gibbons, H., Hawthorne, G., Höfer, S., Schmidt, S., ... & Von Wild, K. (2010). Quality of Life after Brain Injury (QOLIBRI): scale validity and correlates of quality of life. Journal of neurotrauma, 27(7), 1157-1165. doi: 10.1089/neu.2009.1077 Hawthorne, G., Kaye, A. H., Gruen, R., Houseman, D., & Bauer, I. (2011). Traumatic brain injury and quality of life: initial Australian validation of the QOLIBRI. Journal of Clinical Neuroscience, 18(2), 197-202. https://doi.org/10.1016/j.jocn.2010.06.015 |
Yes | Yes, fees may apply | http://qolibrinet.com/registration-for-use/ | Formisano, R., Longo, E., Azicnuda, E., Silvestro, D., D’Ippolito, M., Truelle, J. L., ... & Barba, C. (2017). Quality of life in persons after traumatic brain injury as self-perceived and as perceived by the caregivers. Neurological sciences, 38(2), 279-286. https://link.springer.com/article/10.1007/s10072-016-2755-y | None identified in June 2019 | Validated in multiple languages simultaneously. |
| Injuries and Trauma | Brain injury | Traumatic Brain Injury Quality Of Life | TBI-QOL | USA | 2016 | A measurement system assessing health related quality of life in traumatic brain injury, consisting of 20 calibrated item banks. It relies on computerised adaptive testing and item response theory to select items for testing, meaning the person being assessed receives an individualised measure to better able capture their experience. | 4: Physical health, emotional health, cognition, social participation | Self-report | Confirmatory factor analysis, convergent and discriminant validity, and internal consistency reliability have been demonstrated. | Tulsky, D. S., Kisala, P. A., Victorson, D., Carlozzi, N., Bushnik, T., Sherer, M., ... & Englander, J. (2016). TBI-QOL: development and calibration of item banks to measure patient reported outcomes following traumatic brain injury. The Journal of head trauma rehabilitation, 31(1), 40. doi: 10.1097/HTR.0000000000000131 See also: Lange, R. T., Brickell, T. A., Bailie, J. M., Tulsky, D. S., & French, L. M. (2016). Clinical utility and psychometric properties of the Traumatic Brain Injury Quality of Life Scale (TBI-QOL) in US military service members. The Journal of head trauma rehabilitation, 31(1), 62-78. doi: 10.1097/HTR.0000000000000149 |
Yes | Unknown | Contact: D Tulsky, dtulsky@udel.edu | Kreutzer, J. S., Marwitz, J. H., Sima, A. P., Bergquist, T. F., Johnson-Greene, D., Felix, E. R., ... & Dreer, L. E. (2016). Resilience following traumatic brain injury: a traumatic brain injury model systems study. Archives of physical medicine and rehabilitation, 97(5), 708-713. https://doi.org/10.1016/j.apmr.2015.12.003 | None identified in June 2019 | |
| Injuries and Trauma | Brain Injury - Caregivers | TBI-Careqol Feelings Of Loss-Person With Traumatic Brain Injury | USA | 2019 | Two measures assessing the feeling of loss for a caregiver caring for a patient with traumatic brain injury. One of the measures assesses the loss of self (I feel like my life was ruined by the injury), while the other assesses the loss of person (I mourn the way the person I care for used to be before the injury). Short forms have also been developed for both measures. | Unidimensional | Self-report | Exploratory factor analysis/confirmatory factor analysis, internal consistency and test-retest reliability have been demonstrated. | Carlozzi, N. E., Kallen, M. A., Ianni, P. A., Sander, A. M., Hahn, E. A., Lange, R. T., ... & Hanks, R. (2019). The development of two new computer adaptive tests to evaluate feelings of loss in caregivers of individuals with traumatic brain injury: TBI-CareQOL feelings of loss-self and feelings of loss-person with traumatic brain injury. Archives of physical medicine and rehabilitation, 100(4), S31-S42. https://doi.org/10.1016/j.apmr.2018.05.026 | Unknown | Unknown | Contact: N Carlozzi, carlozzi@med.umich.edu | Keatley, E., Hanks, R., Sander, A. M., Kratz, A. L., Tulsky, D. S., Ianni, P., ... & Carlozzi, N. E. (2019). Group differences among caregivers of civilians and service members or veterans with traumatic brain injury. Archives of physical medicine and rehabilitation, 100(4), S52-S57. https://doi.org/10.1016/j.apmr.2018.11.009 | None identified in June 2019 | ||
| Injuries and Trauma | Burns | Care Burn Scale | UK | 2019 | The overall CARe Burn Scale consists of a number of self-report specific patient reported outcomes measures used to identify health support needs and therapeutic progress for patients and family members affected by a burn injury. While measures have been developed for children, young adults and adults, published information is only currently available for the adult version. The adult scale has 53 items which cover 14 individual scales. | 14: Burn wound/scare discomfort, physical wellbeing, wound/scar treatments, wound/scar dissatisfaction, avoidance behaviours, social situations, friendships, work, family, self-worth, negative mood, intimacy, trauma symptoms, low mood, positive growth after a brain injury | Self-report | Rasch analysis, concurrent and discriminant validity, and internal consistency reliability have been demonstrated. | Griffiths, C., Guest, E., Pickles, T., Hollén, L., Grzeda, M., White, P., ... & Harcourt, D. (2019). The development and validation of the CARe Burn Scale-Adult Form: a Patient Reported Outcome Measure (PROM) to assess quality of life for adults living with a burn injury. Journal of Burn Care & Research. doi: 10.1093/jbcr/irz021 | Yes | Unknown | https://www.careburnscales.org.uk/background | None identified in June 2019 | None identified in June 2019 | New measures, validation for some is still ongoing. | |
| Injuries and Trauma | Burns | Burn Outcome Questionnaire | BOQ | USA | 2000 | A measure of recovery in burn survivors. It was initially developed for use with children, with multiple subscales including upper extremity function, pain, itch, family disruption. Then the 47 item young adults aversion (YABOQ) was developed. The most important 15 items from the two domains (psychosocial and physical) in the YABOQ have been used to develop an adult version in short form. A short form for children and young people is also available. | 2: Physical and psychosocial | Self-report, parent proxy | Factor analysis, construct validity, internal consistency, and test-retest reliability have been demonstrated. | Daltroy, L. H., Liang, M. H., Phillips, C. B., Daugherty, M. B., Hinson, M., Jenkins, M., ... & Reilly, D. (2000). American Burn Association/Shriners Hospitals for Children burn outcomes questionnaire: construction and psychometric properties. The Journal of burn care & rehabilitation, 21(1), 29-39. https://doi.org/10.1097/00004630-200021010-00007 Ryan, C. M., Schneider, J. C., Kazis, L. E., Lee, A., Li, N. C., Hinson, M., ... & Pidcock, F. S. (2013). Benchmarks for multidimensional recovery after burn injury in young adults: the development, validation, and testing of the American Burn Association/Shriners Hospitals for Children young adult burn outcome questionnaire. Journal of Burn Care & Research, 34(3), e121-e142. doi: 10.1097/BCR.0b013e31827e7ecf Chen, L., Lee, A. F., Shapiro, G. D., Goverman, J., Faoro, N., Schneider, J. C., ... & Ryan, C. M. (2017). The Development and Validity of the Adult Burn Outcome Questionnaire Short Form. Journal of Burn Care & Research, 39(5), 771-779. https://doi.org/10.1093/jbcr/irx043 |
Unknown | Unknown | Contact: C Ryan, cryan@mgh.harvard.edu | Ryan, C. M., Lee, A., Kazis, L. E., Schneider, J. C., Shapiro, G. D., Sheridan, R. L., ... & Tompkins, R. G. (2015). Recovery trajectories after burn injury in young adults: does burn size matter?. Journal of Burn Care & Research, 36(1), 118-129. doi: 10.1097/BCR.0000000000000214 | None identified in June 2019 | Available in children, young adult and adult versions. |
| Injuries and Trauma | Burns | Burn Specific Health Scale-Brief | BSHS-B | USA | 1982 | A 114 item measure of dysfunction and distress in burn patient. Also available in an abbreviated (80 items), revised and brief versions (BSHS-B, 40 items); the brief version is the most widely-used and available. | 8: Mobility and self-care, hand function, role activities, body image, affective, family/friends, sexual activity, and general health concerns | Self-report | Principal component analysis and internal consistency have been demonstrated. | Blades, B., Mellis, N., & Munster, A. M. (1982). A burn specific health scale. The Journal of trauma, 22(10), 872-875. https://europepmc.org/abstract/med/7131607 ; See also: Kildal, M., Andersson, G., Fugl-Meyer, A. R., Lannerstam, K., & Gerdin, B. (2001). Development of a brief version of the Burn Specific Health Scale (BSHS-B). Journal of Trauma and Acute Care Surgery, 51(4), 740-746. https://ovidsp.dc2.ovid.com/sp-3.33.0b/ovidweb.cgi?QS2=434f4e1a73d37e8c… | Unknown | Unknown | Contact information not available | Xie, B., Xiao, S. C., Zhu, S. H., & Xia, Z. F. (2012). Evaluation of long term health-related quality of life in extensive burns: a 12-year experience in a burn center. Burns, 38(3), 348-355. https://doi.org/10.1016/j.burns.2011.09.003 | None identified in June 2019 | Translated into Finnish, Swedish, German, Spanish and other languages. |
| Injuries and Trauma | Orthopaedic trauma | Chertsey Outcome Score For Trauma | COST | UK | 2017 | A short (11 item) questionnaire assessing the extent to which patients with orthopaedic trauma return to their pre-injury state. | 3: Symptoms, function and mental status | Self-report | Construct validity and internal consistency reliability have been demonstrated. | Iliopoulos, E., Agarwal, S., & Khaleel, A. (2017). Chertsey Outcome Score for Trauma: Development and validation of a new unifying patient reported outcome measure for orthopaedic trauma. Chinese journal of traumatology, 20(6), 329-332. https://doi.org/10.1016/j.cjtee.2017.08.006 | Unknown | Unknown | Contact: E Iliopoulos, iliopoulose@gmail.com | None identified in June 2019 | None identified in June 2019 | |
| Kidney and Urinary | Advanced kidney disease | Integrated Palliative Outcome Score-Renal | IPOS-Renal | Australia | 2018 | A version of the Palliative Outcomes Scales and its symptom module specifically assessing symptom burden in renal disease, it consists of 11 questions. These questions cover physical and psychological symptoms, carer anxiety, and practical issues. | Unidimensional | Self-report, staff version | Construct (convergent and divergent) validity, internal consistency, and test-retest reliability have been demonstrated. | Raj, R., Ahuja, K., Frandsen, M., Murtagh, F. E., & Jose, M. (2018). Validation of the IPOS-renal symptom survey in advanced kidney disease: a cross-sectional study. Journal of pain and symptom management, 56(2), 281-287. https://doi.org/10.1016/j.jpainsymman.2018.04.006 | Yes | No | https://pos-pal.org/maix/ipos-renal-in-english.php | Morton, R. L., Lioufas, N., Dansie, K., Palmer, S. C., Jose, M. D., Raj, R., ... & Boudville, N. (2019). Use of Patient‐Reported Outcome Measures and Patient‐Reported Experience Measures in Renal units in Australia and New Zealand: a Cross‐sectional Survey Study. Nephrology. https://doi.org/10.1111/nep.13577 | Patient reported outcome measures in Australian and New Zealand renal units: an ANZdata survey of current practice: http://www.anzsnasm.com/4540 | A 2017 survey found this PROM to be the most widely used for patients with advanced kidney disease in Australia. |
| Kidney and Urinary | End stage renal disease | CHOICE Health Experience Questionnaire | CHEQ | USA | 2001 | An 83 item measure assessing health related quality of life in patients with end stage renal disease. Evidence suggests it my be sensitive to differences in dialysis modality and dose. | 21: Physical functioning, role-physical, bodily pain, general health, vitality, social functioning, role-emotional, mental health, CHEQ mental health, CHEQ role-physical, freedom, travel, cognitive functioning, finances, dietary restrictions, recreation, work, body image, sexual functioning, sleep, access-related problems, quality of life | Self-report | Convergent and discriminant validity, and internal-consistency reliability have been demonstrated. | Wu, A. W., Fink, N. E., Cagney, K. A., Bass, E. B., Rubin, H. R., Meyer, K. B., ... & Powe, N. R. (2001). Developing a health-related quality-of-life measure for end-stage renal disease: The CHOICE Health Experience Questionnaire. American Journal of Kidney Diseases, 37(1), 11-21. https://doi.org/10.1053/ajkd.2001.20631 | Unknown | Unknown | Contact: Albert W Wu, awu@jhu.edu and see: https://ars.els-cdn.com/content/image/1-s2.0-S0272638601499859-mmc1.pdf | Jhamb, M., Argyropoulos, C., Steel, J. L., Plantinga, L., Wu, A. W., Fink, N. E., ... & Unruh, M. L. (2009). Correlates and outcomes of fatigue among incident dialysis patients. Clinical Journal of the American Society of Nephrology, 4(11), 1779-1786. doi: 10.2215/CJN.00190109 | None identified in June 2019 | |
| Kidney and Urinary | Female pelvic floor dysfunction, incontinence and prolapse | Incontinence Impact Questionnaire | IIQ | USA | 1994 | A 30 item instrument intended for use alongside the UDI assessing the impact of incontinence on various activities. It is also available in a short form. | 4: Physical activity, travel, social relationships, emotional health | Self-report | Factor (principal component analysis, principal component analysis) and cluster analysis, criterion, convergent and divergent validity, and internal consistency have been demonstrated. | Shumaker, S. A., Wyman, J. F., Uebersax, J. S., McClish, D., & Fantl, J. A. (1994). Health-related quality of life measures for women with urinary incontinence: the Incontinence Impact Questionnaire and the Urogenital Distress Inventory. Quality of Life Research, 3(5), 291-306. https://link.springer.com/content/pdf/10.1007/BF00451721.pdf | Yes | Unknown | https://eprovide.mapi-trust.org/instruments/incontinence-impact-questio… | Barentsen, J. A., Visser, E., Hofstetter, H., Maris, A. M., Dekker, J. H., & de Bock, G. H. (2012). Severity, not type, is the main predictor of decreased quality of life in elderly women with urinary incontinence: a population-based study as part of a randomized controlled trial in primary care. Health and quality of life outcomes, 10(1), 153. https://doi.org/10.1186/1477-7525-10-153 | Prospective observational study of urinary symptoms, sexual behaviours and psychiatric symptoms in ketamine Misusers: https://www.nd.gov.hk/pdf/pos_of_urinary_symptoms_sexual_behaviors_and_… | Validated in a number of other languages including Dutch and Turkish. |
| Kidney and Urinary | Female pelvic floor dysfunction, incontinence and prolapse | Urogenital Distress Inventory | UDI | USA | 1994 | A 19 item measure assessing symptoms associated with lower urinary tract dysfunction. It is available in a short form. | 3: Stress, irritative, and obstructive/discomfort | Self-report | Factor (principal component analysis, principal component analysis) and cluster analysis, criterion, convergent and divergent validity, internal consistency have been demonstrated. | Shumaker, S. A., Wyman, J. F., Uebersax, J. S., McClish, D., & Fantl, J. A. (1994). Health-related quality of life measures for women with urinary incontinence: the Incontinence Impact Questionnaire and the Urogenital Distress Inventory. Quality of Life Research, 3(5), 291-306. https://link.springer.com/content/pdf/10.1007/BF00451721.pdf | Unknown | Unknown | Contact: S A Shumaker, sshumake@wakehealth.edu | Parden, A. M., Gleason, J. L., Jauk, V., Garner, R., Ballard, A., & Richter, H. E. (2013). Incontinence outcomes in women undergoing primary and repeat midurethral sling procedures. Obstetrics and gynecology, 121(2 0 1), 273. doi 10.1097/AOG.0b013e31827c5de7 | Measuring incontinence in Australia (2006): http://www.bladderbowel.gov.au/assets/doc/ncms/Phase1-2InformationAndEv… | Validated in a number of other languages including Dutch and Turkish. |
| Kidney and Urinary | Kidney disease and on dialysis | Kidney Disease Quality Of Life | KDQOL | USA | 1994 | The long form version consists of 134 items and includes the SF-36 in addition to a range of chronic kidney disease-specific subscales assessing health related quality of life; the disease-specific subscales are together called the Kidney Disease Component Summary. It is also available in a short form (KDQOL-SF) and a more abbreviated 36 item version (KDQOL-36). | 4: Physical functioning, mental health, kidney-specific and patient satisfaction | Self-report | Construct validity and internal consistency reliability have been demonstrated. | Hays, R. D., Kallich, J. D., Mapes, D. L., Coons, S. J., & Carter, W. B. (1994). Development of the kidney disease quality of life (KDQOL TM) instrument. Quality of life Research, 3(5), 329-338. https://link.springer.com/content/pdf/10.1007/BF00451725.pdf | Yes | Yes, fees may apply | https://www.rand.org/health-care/surveys_tools/kdqol.html | Kostro, J. Z., Hellmann, A., Kobiela, J., Skóra, I., Lichodziejewska-Niemierko, M., Dębska-Ślizień, A., & Śledziński, Z. (2016, January). Quality of life after kidney transplantation: a prospective study. In Transplantation proceedings (Vol. 48, No. 1, pp. 50-54). Elsevier. https://doi.org/10.1016/j.transproceed.2015.10.058 | None identified in June 2019 | Validated in multiple countries and languages (e.g.,. Arabic, Chinese, Spanish, Urdu). |
| Kidney and Urinary | Kidney stone patients | Wisconsin Stone Quality Of Life | WISQOL | USA | 2013 | This is a 28 item measure of health related quality of life in patients with kidney stones asking about symptoms over the last month. | 4: Social, emotional, stone-related symptom impact, vitality | Self-report | Factor analysis, known groups, convergent and concurrent validity, and internal consistency have been demonstrated. | Penniston, K. L., & Nakada, S. Y. (2013). Development of an instrument to assess the health related quality of life of kidney stone formers. The Journal of urology, 189(3), 921-930. https://doi.org/10.1016/j.juro.2012.08.247. See also Penniston, K. L., Antonelli, J. A., Viprakasit, D. P., Averch, T. D., Sivalingam, S., Sur, R. L., ... & Nakada, S. Y. (2017). Validation and reliability of the Wisconsin stone quality of life questionnaire. The Journal of urology, 197(5), 1280-1288. https://doi.org/10.1016/j.juro.2016.11.097 | Yes | Yes, fees may apply | https://urology.wisc.edu/research/wisqol/ | Raffin, E. P., Penniston, K. L., Antonelli, J. A., Viprakasit, D. P., Averch, T. D., Bird, V. G., ... & Pais, V. M. (2018). The effect of thiazide and potassium citrate use on the health related quality of life of patients with urolithiasis. The Journal of urology, 200(6), 1290-1294. https://doi.org/10.1016/j.juro.2018.06.023 | None identified in June 2019 | |
| Kidney and Urinary | Urinary incontinence and pelvic problems | International Consultation On Incontinence Questionnaire | ICIQ | UK | 2004 | A questionnaire assessing symptom severity and quality of life in patients experiencing urinary incontinence. It is available in a number of forms, including a 5 item short form, and has additional modules (e.g., overactive bladder, vaginal symptoms, cognitive impairment) and different types of administration (e.g., diary). The ICIQ website provides support on which module and form to use. See: http://iciq.net/modules. The ICIQ has developed over time from a number of different measures. | Unidimensional | Self-report | Principal factor analysis, construct and convergent validity, internal consistency and test-retest reliability have been demonstrated. | Avery, K., Donovan, J., Peters, T. J., Shaw, C., Gotoh, M., & Abrams, P. (2004). ICIQ: a brief and robust measure for evaluating the symptoms and impact of urinary incontinence. Neurourology and Urodynamics: Official Journal of the International Continence Society, 23(4), 322-330. doi: 10.1002/nau.20041 See also: http://iciq.net/validation-methodology | Yes | Yes, fees may apply | http://iciq.net/request-form | Glavind, K., Larsen, T., & Lindquist, A. S. I. (2015). Sexual function in women before and after surgery for pelvic organ prolapse. Acta obstetricia et gynecologica Scandinavica, 94(1), 80-85. doi: 10.1111/aogs.12524 | Incontinence in Australia (2013): https://www.aihw.gov.au/getmedia/0fc2a011-d290-42ef-a610-85073ef2909e/1… | Available in numerous languages including some modules specifically for Australian English. |
| Kidney and Urinary - Mental health | Depression and anxiety among kidney transplant recipients (ktrs) | Generalized Anxiety Disorder Scale | GAD-7 | USA | 2006 | A 7 item measure to screening and monitoring symptoms of Generalized Anxiety Disorder (GAD) in outpatient and primary care settings. | Unidimensional | Self-report | Criterion, construct, factorial, and procedural validity have been demonstrated. | Spitzer, R. L., Kroenke, K., Williams, J. B., & Löwe, B. (2006). A brief measure for assessing generalized anxiety disorder: the GAD-7. Archives of internal medicine, 166(10), 1092-1097. doi: 10.1001/archinte.166.10.1092 | Yes | No | https://www.phqscreeners.com/select-screener | Plummer, F., Manea, L., Trepel, D., & McMillan, D. (2016). Screening for anxiety disorders with the GAD-7 and GAD-2: a systematic review and diagnostic metaanalysis. General hospital psychiatry, 39, 24-31. https://doi.org/10.1016/j.genhosppsych.2015.11.005 | Technology Use and Wellbeing Summary Report (2019): https://www.dva.gov.au/sites/default/files/files/health%20and%20wellbei… | The GAD-7 has been translated into many languages (71 translations). |
| Mental health | Alcohol use disorders | Alcohol Use Disorders Identification Test | AUDIT | International | 1993 | A 10 item screening tool developed from a six-country World Health Organization project to assess alcohol consumption, drinking behaviours, and alcohol-related problems. A shorter version of the Alcohol Use Disorders Identification Test (AUDIT-C) also exists. | Unidimensional | Self-report | Reliability, validity and responsiveness has been demonstrated with adequate validation across various papers. | Saunders, J. B., Aasland, O. G., Babor, T. F., De la Fuente, J. R., & Grant, M. (1993). Development of the alcohol use disorders identification test (AUDIT): WHO collaborative project on early detection of persons with harmful alcohol consumption‐II. Addiction, 88(6), 791-804. https://doi.org/10.1111/j.1360-0443.1993.tb02093.x | No | No | https://www.who.int/substance_abuse/publications/audit/en/ | Islam, M. M., Oni, H. T., Lee, K. K., Hayman, N., Wilson, S., Harrison, K., ... & Conigrave, K. M. (2018). Standardised alcohol screening in primary health care services targeting Aboriginal and Torres Strait Islander peoples in Australia. Addiction science & clinical practice, 13(1), 5. https://doi.org/10.1186/s13722-018-0108-2 | None identified in June 2019 | The AUDIT is available in numerous languages (24 translations). |
| Mental health | Alcohol use disorders | Michigan Alcoholism Screening Test | MAST | USA | 1971 | The Michigan Alcoholism Screening Test (MAST) is a 22 item alcoholism-screening tests for identifying dependent drinkers. | 4: Recognition of alcohol problems by self and others, legal, work, and social problems, help seeking, and marital family difficulties | Self-report | Reliability, validity and responsiveness have been demonstrated. | Selzer, M. L. (1971). The Michigan Alcoholism Screening Test: The quest for a new diagnostic instrument. American journal of Psychiatry, 127(12), 1653-1658. https://doi.org/10.1176/ajp.127.12.1653 Selzer, M. L., Vinokur, A., & van Rooijen, L. (1975). A self-administered short Michigan alcoholism screening test (SMAST). Journal of studies on alcohol, 36(1), 117-126. https://doi.org/10.15288/jsa.1975.36.117 Minnich, A., Erford, B. T., Bardhoshi, G., Atalay, Z., Chang, C. Y., & Muller, L. A. (2019). Systematic Evaluation of Psychometric Characteristics of the Michigan Alcoholism Screening Test 13‐Item Short (SMAST) and 10‐Item Brief (BMAST) Versions. Journal of Counseling & Development, 97(1), 15-24. https://doi.org/10.1002/jcad.12231 | No | No | http://lib.adai.washington.edu/dbtw-wpd/exec/dbtwpub.dll?BU=http%3A//li… | Ullman, S. E. (2016). Sexual revictimization, PTSD, and problem drinking in sexual assault survivors. Addictive behaviors, 53, 7-10. https://doi.org/10.1016/j.addbeh.2015.09.010 | None identified in June 2019 | |
| Mental health | Anxiety and depressive disorders | Depression Anxiety Stress Scales | DASS | Australia | 1995 | The DASS is a 42 item measure to assess the negative emotional states of depression, anxiety and stress. A shorter version, DASS-21, was later derived from the development of the DASS. | 3: Depression, anxiety, tension/stress | Self-report | Exploratory and confirmatory factor analysis were used for validation. | Lovibond, P. F., & Lovibond, S. H. (1995). The structure of negative emotional states: Comparison of the Depression Anxiety Stress Scales (DASS) with the Beck Depression and Anxiety Inventories. Behaviour research and therapy, 33(3), 335-343. https://doi.org/10.1016/0005-7967(94)00075-U; Brown, T. A., Chorpita, B. F., Korotitsch, W., & Barlow, D. H. (1997). Psychometric properties of the Depression Anxiety Stress Scales (DASS) in clinical samples. Behaviour research and therapy, 35(1), 79-89. https://doi.org/10.1016/S0005-7967(96)00068-X https://doi.org/10.1016/S0005-7967(96)00068-X | No | No | http://www2.psy.unsw.edu.au/groups/dass/ | Kok, T., de Haan, H. A., van der Meer, M., Najavits, L. M., & De Jong, C. A. (2015). Screening of current post-traumatic stress disorder in patients with substance use disorder using the Depression, Anxiety and Stress Scale (DASS-21): A reliable and convenient measure. European addiction research, 21(2), 71-77. https://doi.org/10.1159/000365283 | Evaluation of the Better Access to Psychiatrists, Psychologists and General Practitioners through the Medicare Benefits Schedule Initiative (2011): https://www.health.gov.au/internet/main/publishing.nsf/Content/5F330C94… | The DASS has been translated into many languages (43 translations). http://www2.psy.unsw.edu.au/groups/dass/translations.htm |
| Mental health | Anxiety disorders | Beck Anxiety Inventory | BAI | USA | 1988 | A 21 item self-report measure of the severity of anxiety in psychiatric populations. It is designed for individuals who are of 17 years of age or older. Can be used in non-clinical, outpatient, and psychiatric settings. | Unidimensional | Self-report | Internal consistency, test-retest reliability, and convergent and discriminant validity have been demonstrated. | Beck, A. T., Epstein, N., Brown, G., & Steer, R. A. (1988). An inventory for measuring clinical anxiety: psychometric properties. Journal of consulting and clinical psychology, 56(6), 893. https://psycnet.apa.org/doi/10.1037/0022-006X.56.6.893 | Yes | Yes, fees may apply | Copyright Beck Anxiety Inventory © 1987, 1990,1993 Aaron T Beck. Descriptive text used with permission of the publisher NCS Pearson, Inc. All rights reserved. https://www.pearsonclinical.com.au/products/view/41 | Piotrowski, C. (2018). The status of the Beck inventories (BDI, BAI) in psychology training and practice: A major shift in clinical acceptance. Journal of Applied Biobehavioral Research, 23(3), e12112. https://doi.org/10.1111/jabr.12112 | Problem gambling in people presenting to a public mental health service (2011): https://trove.nla.gov.au/work/189668590?q&versionId=206352994 | The BAI has been translated into 14 languages. |
| Mental health | Anxiety disorders | State-Trait Anxiety Inventory For Adults | STAI-AD | USA | 1983 | The State-Trait Anxiety Inventory for Adults (STAI-AD) is a 40 item instrument used to assess the level of both state and trait anxiety in adults. The STAI Form X is the previous form. Various other versions also exist, such as the State-Trait Anxiety Inventory for Children (STAIC) and the State-Trait Anger Expression Inventory-2 (STAXI-2). | 2: State anxiety, trait anxiety | Self-report | Internal consistency, concurrent, convergent, divergent, and construct validity have been demonstrated. | Ramanaiah, N. V., Franzen, M., & Schill, T. (1983). A psychometric study of the State-Trait Anxiety Inventory. Journal of personality assessment, 47(5), 531-535. https://doi.org/10.1207/s15327752jpa4705_14 ; Spielberger, C. D. (1983). State-Trait Anxiety Inventory (Form Y) Manual. Palo Alto. CA: Mind Garden. | Yes | Yes, fees may apply | Copyright © 1968, 1977 by Charles D. Spielberger, State-Trait Anxiety Inventory for Adults™ is a trademark of Mind Garden, Inc. | Davey, C. J., Harley, C., & Elliott, D. B. (2013). Levels of state and trait anxiety in patients referred to ophthalmology by primary care clinicians: a cross sectional study. PloS one, 8(6), e65708. https://doi.org/10.1371/journal.pone.0065708 | What is the effectiveness of outreach services for improving mental health? (2018): https://www.dva.gov.au/sites/default/files/Outreach-Technical-Report.pdf | The STAI has been translated into numerous languages, including Spanish, Italian and German. |
| Mental health | Anxiety disorders, Mood disorders, Depression | Anxiety, Depression And Mood Scale | ADAMS | USA | 2003 | A 25 item scale used to screen for anxiety and depression in people with an intellectual disability. Suitable for people 10 years and over. | 5: Manic/hyperactive behaviour, depressed mood, social avoidance, general anxiety and compulsive behaviour | Self-report, care-giver proxy | Exploratory factor analysis and confirmatory factor analysis has provided support for the 5 ADAMS factors. Internal consistency and test-retest reliability have also been demonstrated. | Esbensen, A. J., Rojahn, J., Aman, M. G., & Ruedrich, S. (2003). Reliability and validity of an assessment instrument for anxiety, depression, and mood among individuals with mental retardation. Journal of autism and developmental disorders, 33(6), 617-629. https://doi.org/10.1023/B:JADD.0000005999.27178.55 | Yes | Unknown | Copyright: Anna J. Esbensen, specific contact details unkown | De Winter, C. F., Hermans, H., Evenhuis, H. M., & Echteld, M. A. (2015). Associations of symptoms of anxiety and depression with diabetes and cardiovascular risk factors in older people with intellectual disability. Journal of Intellectual Disability Research, 59(2), 176-185. https://doi.org/10.1111/jir.12049 | None identified in June 2019 | |
| Mental health | Anxiety disorders, Mood disorders, Depression | Mood And Anxiety Symptoms Questionnaire | MASQ | USA | 1991 | The Mood and Anxiety Symptoms Questionnaire is a 90 item self-report designed to measure the dimensions of Clark and Watson's tripartite model, a model based on the assumption that mood can be dissected into three components: negative affect, positive affect, and somatic arousal. | 3: Depressive symptoms, anxious symptoms, mixed symptoms | Self-report | Discriminant and convergent validity have been demonstrated. Both the MASQ and the MASQ-D30 have been shown to be reliable and valid instruments through many validation papers.. | Watson, D., & Clark, L. A. (1991). The mood and anxiety symptom questionnaire. Unpublished manuscript, University of Iowa, department of psychology, Iowa City. ; Watson, D., Weber, K., Assenheimer, J. S., Clark, L. A., Strauss, M. E., & McCormick, R. A. (1995). Testing a tripartite model: I. Evaluating the convergent and discriminant validity of anxiety and depression symptom scales. Journal of abnormal psychology, 104(1), 3. ; Wardenaar, K. J., van Veen, T., Giltay, E. J., de Beurs, E., Penninx, B. W., & Zitman, F. G. (2010). Development and validation of a 30-item short adaptation of the Mood and Anxiety Symptoms Questionnaire (MASQ). Psychiatry research, 179(1), 101-106. https://doi.org/10.1016/j.psychres.2009.03.005 | Yes | Unknown | Contact: D. B. Watson & L. A. Clark | Brandt, C. P., Gonzalez, A., Grover, K. W., & Zvolensky, M. J. (2013). The relation between emotional dysregulation and anxiety and depressive symptoms, pain-related anxiety, and HIV-symptom distress among adults with HIV/AIDS. Journal of Psychopathology and Behavioral Assessment, 35(2), 197-204. https://link.springer.com/article/10.1007/s10862-012-9329-y | None identified in June 2019 | The MASQ has been translated into several languages. |
| Mental health | Childhood anxiety and depressive disorders | Revised Child Anxiety And Depression Scale | RCADS | USA | 2000 | A 47 item questionnaire that measures the reported frequency of various symptoms of anxiety and low mood. The RCADS is a revision of the Spence Children’s Anxiety Scale (SCAS), adapted to correspond more closely to selected DSM-IV anxiety disorders and includes a scale for major depression. There is also a Parent Version (RCADS-P) of the questionnaire. | 6: Separation anxiety disorder, social phobia, generalised anxiety disorder, obsessive–compulsive disorder, panic disorder, depression | Self-report, parent | Internal consistency and factor analysis have provided support for the factorial validity of the RCADS. Test-retest reliability, and convergent and discriminant validity has also been demonstrated. | Chorpita, B. F., Yim, L., Moffitt, C., Umemoto, L. A., & Francis, S. E. (2000). Assessment of symptoms of DSM-IV anxiety and depression in children: A revised child anxiety and depression scale. Behaviour research and therapy, 38(8), 835-855. https://doi.org/10.1016/S0005-7967(99)00130-8 Chorpita, B. F., Moffitt, C. E., & Gray, J. (2005). Psychometric properties of the Revised Child Anxiety and Depression Scale in a clinical sample. Behaviour research and therapy, 43(3), 309-322. https://doi.org/10.1016/j.brat.2004.02.004 | Yes | No | https://www.childfirst.ucla.edu/resources/ | Storch, E. A., Larson, M. J., Ehrenreich-May, J., Arnold, E. B., Jones, A. M., Renno, P., ... & Wood, J. J. (2012). Peer victimization in youth with autism spectrum disorders and co-occurring anxiety: relations with psychopathology and loneliness. Journal of Developmental and Physical Disabilities, 24(6), 575-590. https://link.springer.com/article/10.1007/s10882-012-9290-4 | None identified in June 2019 | The RCADS is available in English, Spanish (US), Spanish (Spain), Chinese, Dutch, Danish, French and Korean; and the RCADS-P is available in English, Spanish (US), Dutch, Danish and Korean. Currently, norms and scoring programs for both the RCADS and RCADS-P are based on English versions. The RCADS and its derivative works (inclusive of translations) are copyrighted by its developers (Chorpita, Ebesutani). They are available for use through Dr. Chorpita’s UCLA resource page. Any use of these instruments implies that the user has read and agreed to the terms of use. |
| Mental health | Depressive disorders | Beck Depression Inventory | BDI | USA | 1996 | A 21 item self-report inventory, one of the most widely used psychometric tests for measuring the severity of depression. Its current version, the BDI-II, is designed for individuals aged 13 and over. The BDI-II contains a substantial revision of the original BDI. Can be used in non-clinical, outpatient, and psychiatric settings. | Unidimensional | Self-report | Concurrent, content, and structural validity have been demonstrated. | Beck, A. T., Steer, R. A., & Brown, G. K. (1996). Beck depression inventory-II. San Antonio, 78(2), 490-498. Wang, Y. P., & Gorenstein, C. (2013). Psychometric properties of the Beck Depression Inventory-II: a comprehensive review. Brazilian Journal of Psychiatry, 35(4), 416-431. http://dx.doi.org/10.1590/1516-4446-2012-1048 | Yes | Yes, fees may apply | Copyright © 1996, 1987 Aaron T Beck https://www.pearsonclinical.com.au/products/view/39 | Vorontsova, N., Garety, P., & Freeman, D. (2018). Schematic beliefs and problem solving performance predict depression in people experiencing persecutory delusions. Journal of psychiatric research, 100, 5-7. https://doi.org/10.1016/j.jpsychires.2018.02.010 | What are effective interventions for adjustment disorder? A Rapid Evidence Assessment (2016): https://www.dva.gov.au/sites/default/files/Question%2012%20Adjustment%2… | The BDI-II is available in 73 languages. |
| Mental health | Depressive disorders | Center For Epidemiological Studies-Depression Scale | CES-D | USA | 1977 | A 20 item measure assessing symptoms of depression over days in a 2 week period. | 9: Sadness, loss of interest, appetite, sleep, thinking/concentration, guilt, tired, movement, suicidal ideation | Self-report | Internal consistency, test-retest repeatability, and convergent validity have been demonstrated. | Radloff, L. S. (1977). The CES-D scale: A self-report depression scale for research in the general population. Applied psychological measurement, 1(3), 385-401. https://doi.org/10.1177/014662167700100306 | No | No | https://cesd-r.com/about-cesdr/ | Salk, R. H., Hyde, J. S., & Abramson, L. Y. (2017). Gender differences in depression in representative national samples: meta-analyses of diagnoses and symptoms. Psychological bulletin, 143(8), 783. doi: 10.1037/bul0000102 | Report on the second Australian child and adolescent survey of mental health and wellbeing (2015): https://www.health.gov.au/internet/main/publishing.nsf/Content/9DA8CA21… | The CES-D is available in many languages. |
| Mental health | Depressive disorders | Depression And Family Functioning Scale | DFFS | USA | 2016 | A 15 item patient-reported outcome measure developed to assess the impact of major depressive disorder (MDD) on partner and family interactions and quality of relationships. | Unidimensional | Self-report | Principal components analysis, internal consistency, test-retest reliability, convergent and divergent validity, and responsiveness to change have been demonstrated. | Williams, V., Francois, C., Danchenko, N., Nelson, L., Williams, N., Yarr, S., ... & Lancon, C. (2016). Psychometric validation of the depression and family functioning scale. Current medical research and opinion, 32(4), 639-650. https://doi.org/10.1185/03007995.2015.1135111 | Unknown | Unknown | Contact: RTI Health Solutions, vwilliams@rti.org | François, C., Nielsen, R., Danchenko, N., Williams, V., & Lançon, C. (2017). The impact of antidepressant treatments on family functioning in adults with major depressive disorder: a post hoc comparison of vortioxetine and agomelatine. Current medical research and opinion, 33(6), 1057-1066. https://doi.org/10.1080/03007995.2017.1299701 | None identified in June 2019 | |
| Mental health | Depressive disorders | Fatigue Associated With Depression Questionnaire | FAsD | USA | 2011 | A 13 item patient-reported questionnaire designed to assess fatigue associated with depression in the past week. | 2: Fatigue experience, fatigue impact | Self-report | Reliability, validity, and factor structure have been demonstrated. | Matza, L. S., Phillips, G. A., Revicki, D. A., Murray, L., & Malley, K. G. (2011). Development and validation of a patient-report measure of fatigue associated with depression. Journal of affective disorders, 134(1-3), 294-303. https://doi.org/10.1016/j.jad.2011.06.028 | Unknown | Unknown | Contact: louis.matza@unitedbiosource.com | Matza, L. S., Wyrwich, K. W., Phillips, G. A., Murray, L. T., Malley, K. G., & Revicki, D. A. (2013). The Fatigue Associated with Depression Questionnaire (FAsD): responsiveness and responder definition. Quality of Life Research, 22(2), 351-360. https://link.springer.com/article/10.1007/s11136-012-0142-6 | None identified in June 2019 | |
| Mental health | Depressive disorders | Geriatric Depression Scale | GDS | USA | 1982 | A 15 item screening test for depression in elderly people. Questions require yes/no answers. Can be used in hospital, aged care home and community settings. | Unidimensional | Self-report | Internal consistency, test-retest reliability and validity have been demonstrated. | Yesavage, J. A., Brink, T. L., Rose, T. L., Lum, O., Huang, V., Adey, M., & Leirer, V. O. (1982). Development and validation of a geriatric depression screening scale: a preliminary report. Journal of psychiatric research, 17(1), 37-49. https://doi.org/10.1016/0022-3956(82)90033-4 | No | No | https://web.stanford.edu/~yesavage/GDS.html | Wongpakaran, N., Wongpakaran, T., & Van Reekum, R. (2013). The use of GDS-15 in detecting MDD: a comparison between residents in a Thai long-term care home and geriatric outpatients. Journal of clinical medicine research, 5(2), 101. doi: 10.4021/jocmr1239w | None identified in June 2019 | The GDS has been translated into many languages (55 translations). |
| Mental health | Depressive disorders, Anxiety disorders, Alcohol disorders | Patient Health Questionnaire | PHQ | USA | 1999 | The PHQ, the self-administered version of the PRIME-MD, contains mood, anxiety, alcohol, eating, and somatoform modules as covered in the original PRIME-MD. The PHQ-9 is specific to depression. | 5: Depression, Anxiety, Somatoform, Alcohol, Eating | Self-report | Internal consistency, construct validity, criterion validity, and responsiveness to change has been demonstrated. | Kroenke, K., Spitzer, R. L., & Williams, J. B. (2001). The PHQ‐9: validity of a brief depression severity measure. Journal of general internal medicine, 16(9), 606-613. doi: 10.1046/j.1525-1497.2001.016009606.x Kroenke, K., Spitzer, R. L., & Williams, J. B. (2002). The PHQ-15: validity of a new measure for evaluating the severity of somatic symptoms. Psychosomatic medicine, 64(2), 258-266. https://ovidsp.dc2.ovid.com/sp-3.33.0b/ovidweb.cgi?WebLinkFrameset=1&S=… |
Yes | No | https://www.phqscreeners.com/ | Manea, L., Gilbody, S., & McMillan, D. (2012). Optimal cut-off score for diagnosing depression with the Patient Health Questionnaire (PHQ-9): a meta-analysis. Cmaj, 184(3), E191-E196. https://doi.org/10.1503/cmaj.110829 | Screening for depression (2012): https://www.aafp.org/afp/2012/0115/p139.pdf | There are numerous translations of the PHQ as well as the PHQ-9, which are freely downloadable on the PHQ website. |
| Mental health | Generic for Psychiatry/Psychology | Symptom Checklist-90-Revised | SCL-90-R | USA | 2010 | The Symptom Checklist-90-R (SCL-90-R) is a 90 item instrument used to screen for a broad range of psychological problems and symptoms of psychopathology, it is also useful as a progress or outcomes measurement instrument. | 9: Somatization, obsessive-compulsive, interpersonal sensitivity, depression, anxiety, hostility, phobic anxiety, paranoid ideation, psychoticism, and a category of "additional items" which helps clinicians assess other aspect of the clients symptoms. | Self-report | Internal consistency and test-retest reliability have been demonstrated. A high number of studies have been conducted demonstrating the reliability, validity, and utility of the SCL-90-R. | Derogatis, L. R., & Unger, R. (2010). Symptom checklist‐90‐revised. The Corsini encyclopedia of psychology, 1-2. https://doi.org/10.1002/9780470479216.corpsy0970 | Yes | Yes, fees may apply | https://www.pearsonclinical.com.au/products/view/243 | Lee, S. S., Allen, J., Black, D. W., Zanarini, M. C., & Schulz, S. C. (2016). Quetiapine's effect on the SCL-90-R domains in patients with borderline personality disorder. Annals of clinical psychiatry: official journal of the American Academy of Clinical Psychiatrists, 28(1), 4-10. https://europepmc.org/abstract/med/26855980 | None identified in June 2019 | The SCL-90-R has been translated into several languages. |
| Mental health | Mental wellbeing | Warwick Edinburgh Mental Wellbeing Scale | WEMWBS | UK | 2007 | The Warwick-Edinburgh Mental Wellbeing Scale was developed to enable the monitoring of mental wellbeing in the general population and the evaluation of projects, programmes and policies which aim to improve mental wellbeing. Can be applied in community, school, workplace and research settings. | Unidimensional | Self-report | Confirmatory factor analysis has provided support for the single factor hypothesis. Internal consistency, test-retest reliability, and convergent and discriminant validity have also been demonstrated. | Tennant, R., Hiller, L., Fishwick, R., Platt, S., Joseph, S., Weich, S., ... & Stewart-Brown, S. (2007). The Warwick-Edinburgh mental well-being scale (WEMWBS): development and UK validation. Health and Quality of life Outcomes, 5(1), 63. https://doi.org/10.1186/1477-7525-5-63 | Yes | No | https://warwick.ac.uk/fac/sci/med/research/platform/wemwbs/using/regist… - (S)WEMWBS is protected by copywrite. The (S)WEMWBS is free to use, but you need to ask for permission before you begin using It. | Hunter, S. C., Houghton, S., & Wood, L. (2015). Positive mental well-being in australian adolescents: Evaluating the Warwick-Edinburgh mental well-being scale. The Educational and Developmental Psychologist, 32(2), 93-104. https://doi.org/10.1017/edp.2015.12 | None identified in June 2019 | The WEMWBS has been translated into several other languages. |
| Mental health | Psychological distress | Kessler 10 Psychological Distress Scale | K10 | USA | 2002 | A 10 item questionnaire designed to measure the level of distress and severity associated with psychological symptoms in population surveys. A shorter 6 item version of the scale has also been developed. | Unidimensional | Self-report | Internal consistency, factor analysis, and item response theory analyses provided support for the reliability and validity of the scale. | Kessler, R. C., Andrews, G., Colpe, L. J., Hiripi, E., Mroczek, D. K., Normand, S. L., ... & Zaslavsky, A. M. (2002). Short screening scales to monitor population prevalences and trends in non-specific psychological distress. Psychological medicine, 32(6), 959-976. doi: https://doi.org/10.1017/S0033291702006074. ; Furukawa, T. A., Kessler, R. C., Slade, T., & Andrews, G. (2003). The performance of the K6 and K10 screening scales for psychological distress in the Australian National Survey of Mental Health and Well-Being. Psychological medicine, 33(2), 357-362. https://doi.org/10.1017/S0033291702006700 DOI: https://doi.org/10.1017/S0033291702006700 |
No | No | https://www.hcp.med.harvard.edu/ncs/k6_scales.php | Bowers, J., Lo, J., Miller, P., Mawren, D., & Jones, B. (2018). Psychological distress in remote mining and construction workers in Australia. Medical Journal of Australia, 208(9), 391-397. https://doi.org/10.5694/mja17.00950 | Information Paper: Use of the Kessler Psychological Distress Scale in ABS Health Surveys, Australia (2001): https://www.abs.gov.au/ausstats/abs@.nsf/papersbyReleaseDate/4D5BD324FE… | The K10 is available in numerous languages. |
| Mental health | Psychological distress | Profile Of Mood States | POMS | USA | 1971 | A 65 item measure of psychological distress. The second edition of the Profile of mood states scale is known as the POMS-short form (37 items). The short form is considered to be a great alternative to the long form if a briefer measure of psychological distress is needed. A bipolar version of the POMS also exists (POMS-BI). | 6: Tension or anxiety, anger or hostility, vigour or activity, fatigue or inertia, depression or dejection, confusion or bewilderment | Self-report | Reliability and validity have been demonstrated. | McNair, D. M. (1971). Manual profile of mood states. Educational & Industrial testing service. Curran, S. L., Andrykowski, M. A., & Studts, J. L. (1995). Short form of the profile of mood states (POMS-SF): psychometric information. Psychological assessment, 7(1), 80. https://psycnet.apa.org/buy/1995-27722-001 | Yes | Yes, fees may apply | https://shop.acer.edu.au/profile-of-mood-states-2nd-edition-poms-2tm | Rossi, V., & Pourtois, G. (2012). Transient state-dependent fluctuations in anxiety measured using STAI, POMS, PANAS or VAS: a comparative review. Anxiety, Stress & Coping, 25(6), 603-645. https://doi.org/10.1080/10615806.2011.582948 | None identified in June 2019 | |
| Musculoskeletal | Anterior cruciate ligament (ACL) reconstruction | Knee Injury And Osteoarthritis Outcome Score | KOOS | Sweden, USA | 1998 | A 42 item measure of short and long term patient-relevant outcomes following knee-injury. It includes questions from the Western Ontario and MacMaster's Universities (WOMAC) Osteoarthritis Index but also additional items to account for younger and/or more active patients. Involves Likert-style responses related to frequency and severity of pain and difficulty. Short-form and child version have also been developed. | 5: Pain, symptoms, activities of daily living, sport and recreation function, and knee-related quality of life | Self-report | Construct validity and test-retest reliability have been demonstrated. | Roos, E. M., Roos, H. P., Lohmander, L. S., Ekdahl, C., & Beynnon, B. D. (1998). Knee Injury and Osteoarthritis Outcome Score (KOOS)—development of a self-administered outcome measure. Journal of Orthopaedic & Sports Physical Therapy, 28(2), 88-96. https://www.jospt.org/doi/pdfplus/10.2519/jospt.1998.28.2.88 See also: Roos, E. M., & Lohmander, L. S. (2003). The Knee injury and Osteoarthritis Outcome Score (KOOS): from joint injury to osteoarthritis. Health and quality of life outcomes, 1(1), 64. https://doi.org/10.1186/1477-7525-1-64 | No | No | http://www.koos.nu/ | Dere, D., Paker, N., Soy Buğdayci, D., & Tekdöş Demircioğlu, D. (2014). Effect of body mass index on functional recovery after total knee arthroplasty in ambulatory overweight or obese women with osteoarthritis. Acta Orthop Traumatol Turc, 48(2), 117-121. doi: 10.3944/AOTT.2014.3126 | None identified in June 2019 | |
| Musculoskeletal | Back and spine pain | Extended Aberdeen Spine Pain Scales | EASPS | UK | 2001 | An extended version of the Aberdeen Lower Back Pain Scale to cover the whole of the spine, it involves a set of interlocking outcomes measures for the neck, upper and lower back regions of the spine. | 3: Functional disability, lower leg symptoms, painful respiratory movement contrasted with activity restriction | Self-report | Principal component analysis, criterion and construct validity, test-retest and internal consistency reliability have been demonstrated. | Williams, N. H., Wilkinson, C., & Russell, I. T. (2001). Extending the Aberdeen Back Pain Scale to include the whole spine: a set of outcome measures for the neck, upper and lower back. Pain, 94(3), 261-274. https://doi.org/10.1016/S0304-3959(01)00360-8 | Unknown | Unknown | Contact: Nefyn Williams, Nefyn.Williams@liverpool.ac.uk | Lee, A. L., Goldstein, R. S., & Brooks, D. (2017). Chronic pain in people with chronic obstructive pulmonary disease: prevalence, clinical and psychological implications. Chronic Obstructive Pulmonary Diseases, 4(3), 194. doi: 10.15326/jcopdf.4.3.2016.0172 | None identified in June 2019 | |
| Musculoskeletal | Back pain | Oswestry Disability Index | ODI | UK | 1980 | Measures pain-related disability for low back pain and spinal disorders more generally and is the preferred choice in severe disability when compared with the Roland-Morris Questionnaire. It is available in multiple versions and its items are included in PROMIS. | Unidimensional | Self-report | Construct validity, internal consistency, and test-retest reliability have been demonstrated. | Fairbank, J. C., Couper, J., Davies, J. B., & O’brien, J. P. (1980). The Oswestry low back pain disability questionnaire. Physiotherapy, 66(8), 271-273. https://s3.amazonaws.com/academia.edu.documents/30399446/oswestry_low_b… | Yes | Unknown | Contact: jeremy.fairbank@ndorms.ox.ac.uk | Park, S. D., & Yu, S. H. (2013). The effects of abdominal draw-in maneuver and core exercise on abdominal muscle thickness and Oswestry disability index in subjects with chronic low back pain. Journal of exercise rehabilitation, 9(2), 286. doi: 10.12965/jer.130012 | Horizon scanning technology prioritising summary - Transaxial anterior lumbar interbody fusion (2010): http://www.horizonscanning.gov.au/internet/horizon/publishing.nsf/Conte… | |
| Musculoskeletal | Back pain | Roland-Morris Disability Questionnaire | RDQ or RMDQ | UK | 1983 | A short measure of disability particularly caused by low back pain, it is primarily recommended for mild to moderate disability, it only focuses on physical problems. It is available in a number of forms and uses a checklist format. There are different questionnaires available: 24, 18 and 11 item questionnaires. | Unidimensional | Self-report | Construct validity, internal consistency, and test-retest reliability have been demonstrated. | Roland, M., & Morris, R. (1983). A Study of the Natural History of Back Pain: Part I Development of a Reliable and Sensitive Measure of Disability in Low-Back Pain. spine, 8(2), 141-144. https://journals.lww.com/spinejournal/Abstract/1983/03000/A_Study_of_th… See also: Roland, M., & Fairbank, J. (2000). The Roland–Morris disability questionnaire and the Oswestry disability questionnaire. Spine, 25(24), 3115-3124. https://ovidsp.dc2.ovid.com/sp-3.33.0b/ovidweb.cgi?QS2=434f4e1a73d37e8c… |
No | No | http://www.rmdq.org/ | Xia, T., Long, C. R., Gudavalli, M. R., Wilder, D. G., Vining, R. D., Rowell, R. M., ... & Meeker, W. C. (2016). Similar Effects of Thrust and Non-Thrust Spinal Manipulation Found in Adults With Subacute and Chronic Low Back Pain–A Controlled Trial with Adaptive Allocation. Spine, 41(12), E702. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4902754/ | None identified in June 2019 | |
| Musculoskeletal | Elbow surgery | Oxford Elbow Score | OES | UK | 2008 | A 12 item measure for assessing outcomes of elbow surgery. This patient-reported outcome measure can be used as an indicator for recovery and improvement in quality of life after elbow surgery. | 3: Elbow function, pain, social-psychological | Self-report | Exploratory factor analysis/principal component analysis, convergent and divergent validity, internal consistency and test-retest reliability have been demonstrated. | Dawson, J., Doll, H., Boller, I., Fitzpatrick, R., Little, C., Rees, J., ... & Carr, A. J. (2008). The development and validation of a patient-reported questionnaire to assess outcomes of elbow surgery. The Journal of bone and joint surgery. British volume, 90(4), 466-473. doi: 10.1302/0301-620X.90B4 | Yes | Yes, fees may apply | https://innovation.ox.ac.uk/outcome-measures/the-oxford-elbow-score-oes/ | Brkljac, M., Kalloo, D., Hirehal, K., & Kumar, S. (2015). The effect of platelet-rich plasma injection on lateral epicondylitis following failed conservative management. Journal of orthopaedics, 12, S166-S170. https://doi.org/10.1016/j.jor.2015.10.018 | The New Zealand Joint Registry (2016): https://nzoa.org.nz/system/files/NZJR%2017%20year%20Report.pdf | Translated into numerous other languages. |
| Musculoskeletal | Foot and ankle issues | Ankle Osteoarthritis Scale | AOS | USA | 1998 | An 18 item instrument for the assessment of both pain and disability in ankle arthritis. Responses are provided along a visual analogue scale measuring 100mm. A higher score is closer to 100. Item scores are summed into subscales scores and a total score. | 2: Pain, disability | Self-report | Construct and criterion validity, and test-retest reliability have been demonstrated. | Domsic, R. T., & Saltzman, C. L. (1998). Ankle osteoarthritis scale. Foot & ankle international, 19(7), 466-471. https://journals.sagepub.com/doi/pdf/10.1177/107110079801900708 | Unknown | Unknown | Contact: Charles L Saltzman, CHARLES.SALTZMAN@HSC.UTAH.EDU | Townshend, D., Di Silvestro, M., Krause, F., Penner, M., Younger, A., Glazebrook, M., & Wing, K. (2013). Arthroscopic versus open ankle arthrodesis: a multicenter comparative case series. JBJS, 95(2), 98-102. doi: 10.2106/JBJS.K.01240 | Horizon Scanning Technology Prioritising Summary - Total ankle replacement with uncemented prostheses (2010): http://www.horizonscanning.gov.au/internet/horizon/publishing.nsf/Conte…(pdf.pdf | |
| Musculoskeletal | Hip replacement | Oxford Hip Score | OHS | UK | 1996 | A 12 item measure developed to access function and pain in patients undergoing hip replacement surgery. Item are based around activities of daily living. | Unidimensional | Self-report | Construct validity, internal consistency, and test-retest reliability have been demonstrated. | Dawson, J., Fitzpatrick, R., Carr, A., & Murray, D. (1996). Questionnaire on the perceptions of patients about total hip replacement. The Journal of bone and joint surgery. British volume, 78(2), 185-190. https://doi.org/10.1302/0301-620X.78B2.0780185 | Yes | Yes, fees may apply | https://innovation.ox.ac.uk/outcome-measures/oxford-hip-score-ohs/ | Hill, J. C., Diamond, O. J., O’Brien, S., Boldt, J. G., Stevenson, M., & Beverland, D. E. (2015). Early surveillance of ceramic-on-metal total hip arthroplasty. The bone & joint journal, 97(3), 300-305. doi:10.1302/0301-620X.97B3.33242 $2.00 | Arthroplasty clinical outcomes registry - Annual Report (2016): http://www.acornregistry.org/images/Acorn-Annual-Report-2016-v12.pdf | Available in numerous other languages including Spanish and Chinese. |
| Musculoskeletal | Knee replacement | Oxford Knee Score | OKS | UK | 1998 | A 12 item measure originally developed for patients undergoing total knee replacement. It is a sequel to the Oxford Hip Score Items ask about the extent and frequency of pain and difficulty with movement and day-to-day activities. | Unidimensional | Self-report | Construct validity, internal consistency, and test-retest reliability have been demonstrated. | Dawson, J., Fitzpatrick, R., Murray, D., & Carr, A. (1998). Questionnaire on the perceptions of patients about total knee replacement. The Journal of bone and joint surgery. British volume, 80(1), 63-69. https://doi.org/10.1302/0301-620X.80B1.0800063 | Yes | Yes, fees may apply | https://innovation.ox.ac.uk/outcome-measures/oxford-knee-score-oks/ | Winemaker, M., Rahman, W. A., Petruccelli, D., & de Beer, J. (2012). Preoperative knee stiffness and total knee arthroplasty outcomes. The Journal of arthroplasty, 27(8), 1437-1441. https://doi.org/10.1016/j.arth.2011.12.015 | Arthroplasty clinical outcomes registry - Annual report (2016): http://www.acornregistry.org/images/Acorn-Annual-Report-2016-v12.pdf | Available in numerous other languages including Japanese. |
| Musculoskeletal | Low back pain | Quebec Back Pain Disability Scale | QBPDS | Canada | 1995 | A 20 item (i.e., daily activities) instrument assessing the level of functional disability in individuals with back pain. Can be used in rehabilitation and physiotherapy. | 6 types of activities: Bed/rest items, sitting/standing, ambulation, movement, bending/stooping, handling of large/heavy objects | Self-report | Construct validity, test-retest and internal consistency reliability have been demonstrated. | Kopec, J. A., Esdaile, J. M., Abrahamowicz, M., Abenhaim, L., Wood-Dauphinee, S., Lamping, D. L., & Williams, J. I. (1995). The Quebec Back Pain Disability Scale. Measurement properties. Spine, 20(3), 341-352. https://europepmc.org/abstract/med/7732471 See also: Kopec, J. A., Esdaile, J. M., Abrahamowicz, M., Abenhaim, L., Wood-Dauphinee, S., Lamping, D. L., & Williams, J. I. (1996). The Quebec back pain disability scale: conceptualization and development. Journal of clinical epidemiology, 49(2), 151-161. https://doi.org/10.1016/0895-4356(96)00526-4 |
Yes | Unknown | Contact: jacek.kopec@ubc.ca | Di Ciaccio, E., Polastri, M., Bianchini, E., & Gasbarrini, A. (2012). Herniated lumbar disc treated with Global Postural Reeducation. A middle-term evaluation. Age (years), 43(14.5), 22-76. http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.470.3754&rep=r… | None identified in June 2019 | Originally developed in French and English, versions in Dutch, Iranian, Brazilian Portuguese, Turkish, Chinese, Greek, Polish, Korean and Arabic. |
| Musculoskeletal | Low back pain | Tampa Scale For Kinesiophobia Short Form | TSK-11 | UK | 2005 (short form) | Assesses pain related fear in low-back pain patients. It is also available in a 11 item short form, which has been more thoroughly investigated for psychometric properties in English. | Unidimensional | Self-report | Concurrent and predictive validity, internal consistency, and test-retest reliability have been demonstrated. | Woby, S. R., Roach, N. K., Urmston, M., & Watson, P. J. (2005). Psychometric properties of the TSK-11: a shortened version of the Tampa Scale for Kinesiophobia. Pain, 117(1-2), 137-144. doi: 10.1016/j.pain.2005.05.029 | Unknown | Unknown | Contact: S Woby, steve.woby@pat.nhs.uk | Feigenbaum, L. A., Baraga, M., Kaplan, L. D., Roach, K. E., Calpino, K. M., Dorsey, K., ... & Scavo, V. A. (2015). Return to sport following surgery for a complicated tibia and fibula fracture in a collegiate women's soccer player with a low level of kinesiophobia. International journal of sports physical therapy, 10(1), 95. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4325293/pdf/ijspt-01-095.p… | None identified in June 2019 | |
| Musculoskeletal | Musculoskeletal conditions | Disablement In The Physically Active | DPA | USA | 2010 | Assesses outcomes following musculoskeletal injuries. | 4: Quality of life, disability, functional limitations, impairments | Self-report | Hierarchical confirmatory factor analysis, concurrent validity, internal consistency, and test-retest reliability have been demonstrated. | Vela, L. I., & Denegar, C. R. (2010). The disablement in the physically active scale, part II: the psychometric properties of an outcomes scale for musculoskeletal injuries. Journal of athletic training, 45(6), 630-641. https://www.natajournals.org/doi/full/10.4085/1062-6050-45.6.630 | Unknown | Unknown | Contact: Luzita I. Vela, Lv19@txstate.edu. | Hudson, R., Richmond, A., Sanchez, B., Stevenson, V., Baker, R. T., May, J., ... & Reordan, D. (2016). An alternative approach to the treatment of meniscal pathologies: a case series analysis of the Mulligan Concept “Squeeze” technique. International journal of sports physical therapy, 11(4), 564. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4970847/ | None identified in June 2019 | |
| Musculoskeletal | Musculoskeletal conditions | Multidimensional Task Ability Profile | MTAP | USA | 2005 | A novel measure using a combination of drawings and task descriptions to assess functional capacity. The 111 items each involve a drawing of a common functional activity of daily living or work accompanied by a short description, with a rating scale. Administered on the computer, the description is presented simultaneously and in audio as well as written. | Unidimensional: Global functional ability | Self-report | Concurrent validity, test-retest, and split-half reliability have been demonstrated. | Mayer, J., Mooney, V., Matheson, L., Leggett, S., Verna, J., Balourdas, G., & DeFilippo, G. (2005). Reliability and validity of a new computer-administered pictorial activity and task sort. Journal of Occupational Rehabilitation, 15(2), 203-213. https://link.springer.com/article/10.1007/s10926-005-1219-7 | Yes | Yes, fees may apply | https://www.mtapsystems.com/ | Mayer, J. M., Mooney, V., Matheson, L. N., Erasala, G. N., Verna, J. L., Udermann, B. E., & Leggett, S. (2006). Continuous low-level heat wrap therapy for the prevention and early phase treatment of delayed-onset muscle soreness of the low back: a randomized controlled trial. Archives of physical medicine and rehabilitation, 87(10), 1310-1317. https://doi.org/10.1016/j.apmr.2006.07.259 | None identified in June 2019 | Use of MTAP requires a membership and is only open to health professionals or educators. |
| Musculoskeletal | Musculoskeletal conditions | Musculoskeletal Function Assessment | MFA | USA | 1996 | A 100 item measure of self-reported health for patients experiencing a broad range of musculoskeletal disorders of the extremities. It also used in patients with musculoskeletal trauma. It is also available in a short form. | 10: Self care, rest and sleep, fine motor skills, mobility, work, housework, recreation and leisure, family relationships, cognition and thinking, and emotional adjustment and coping | Self-report | Criterion validity, construct (convergent and discriminant) validity, internal consistency and test-retest reliability have been demonstrated. | Engelberg, R., Martin, D. P., Agel, J., Obremsky, W., Coronado, G., & Swiontkowski, M. F. (1996). Musculoskeletal Function Assessment instrument: criterion and construct validity. Journal of orthopaedic research, 14(2), 182-192. https://onlinelibrary.wiley.com/doi/pdf/10.1002/jor.1100140204 Martin, D. P., Engelberg, R., Agel, J., Snapp, D., & Swiontkowski, M. F. (1996). Development of a musculoskeletal extremity health status instrument: the Musculoskeletal Function Assessment instrument. Journal of Orthopaedic Research, 14(2), 173-181. https://onlinelibrary.wiley.com/doi/pdf/10.1002/jor.1100140203 |
Yes | Unknown | Copyright owned by the University of Washington, specific contact details unknown | Swords, M. P., Alton, T. B., Holt, S., Sangeorzan, B. J., Shank, J. R., & Benirschke, S. K. (2014). Prognostic value of computed tomography classification systems for intra-articular calcaneus fractures. Foot & ankle international, 35(10), 975-980. doi: 10.1177/1071100714548196 | None identified in June 2019 | |
| Musculoskeletal | Musculoskeletal conditions | Musculoskeletal Health Questionnaire | MSK-HQ | UK | 2016 | Coproduced with patients, this 14 item measure aims for a holistic view of the impact on a patient's musculoskeletal health throughout the clinical pathway, with questions on washing/dressing, sleep and overall impact. It is designed to applicable for across musculoskeletal conditions and for use by different health care providers. | 14: Severity of pain/stiffness (in the day and night), physical function (walking and dressing), physical activity level, pain interference (with work/daily routine and with social activities/hobbies), difficulty with sleep, fatigue/low energy levels, emotional well-being (anxiety and mood), understanding of diagnosis and treatment, confidence to self-manage (pain self-efficacy), independence and overall impact from symptoms | Self-report | Convergent validity, internal consistency, and test-retest reliability have been demonstrated. Validation is ongoing. | Hill, J. C., Kang, S., Benedetto, E., Myers, H., Blackburn, S., Smith, S., ... & Glyn-Jones, S. (2016). Development and initial cohort validation of the Arthritis Research UK Musculoskeletal Health Questionnaire (MSK-HQ) for use across musculoskeletal care pathways. BMJ open, 6(8), e012331. See also: Norton, S., Ellis, B., Santana Suárez, B., Schwank, S., Fitzpatrick, R., Price, A., & Galloway, J. (2018). Validation of the Musculoskeletal Health Questionnaire in inflammatory arthritis: a psychometric evaluation. Rheumatology, 58(1), 45-51. https://doi.org/10.1093/rheumatology/key240 | Yes | Yes, fees may apply | https://www.keele.ac.uk/pchs/implementingourresearch/makinganimpact/mus… | Gibbons, E., & Fitzpatrick, R. (2018). An alternative approach to implementing patient-reported outcome measures. Pilot and feasibility studies, 4(1), 96. https://doi.org/10.1186/s40814-018-0289-1 | None identified in June 2019 | |
| Musculoskeletal | Musculoskeletal conditions | Fear Avoidance Component Scale | FACS | USA | 2016 | Measures fear avoidance in patients experiencing painful often chronic medical conditions. Can be a psycho-social risk factor for disability. | Unidimensional | Self-report | Construct and discriminant validity, internal consistency, and test-retest reliability have been demonstrated. | Neblett, R., Mayer, T. G., Hartzell, M. M., Williams, M. J., & Gatchel, R. J. (2016). The Fear‐avoidance Components Scale (FACS): Development and Psychometric Evaluation of a New Measure of Pain‐related Fear Avoidance. Pain Practice, 16(4), 435-450. doi: https://doi.org/10.1111/papr.12333 | Unknown | Unknown | Contact: Tom G. Mayer, tgmayer@pridedallas.com | None identified in June 2019 | None identified in June 2019 | Validated in English and Spanish. |
| Musculoskeletal | Musculoskeletal conditions | Keele Musculoskeletal Patient Reported Outcome Measure | MSK-PROM | UK | 2015 | A brief 6 item measure of outcome domains relevant across musculoskeletal conditions. | 6: independence, severity of the one thing that is most difficult, work interference, understanding how to deal with the symptoms, ability to do activities/roles that matter, overall impact | Self-report | Convergent validity and test-retest reliability have been demonstrated. | Hill, J. C., Thomas, E., Hill, S., Foster, N. E., & van der Windt, D. A. (2015). Development and validation of the Keele Musculoskeletal Patient Reported Outcome Measure (MSK-PROM). PloS one, 10(4), e0124557. https://doi.org/10.1371/journal.pone.0124557 | Unknown | Unknown | https://www.wmahsn.org/programmes/view/msk-prom-a-musculoskeletal-patie…- | None identified in June 2019 | Developing and piloting a generic patient reported outcome measure for use across musculoskeletal care pathways (2016): https://www.arthritisresearchuk.org/~/media/Files/Policy%20files/2016/m… | |
| Musculoskeletal | Musculoskeletal pain and low back pain | Bournemouth Questionnaire | BQ | UK | 1999 | A short measure (7 items) of pain originally validated for patients with low back or neck pain using 11 point NRS response scales. It was originally developed for use in chiropractic patients. | 7: Pain, daily activities, anxiety, depression, recreational activities, affected by work, controllability | Self-report | Construct validity and test-retest reliability have been demonstrated. | Bolton, J. E., & Breen, A. C. (1999). The Bournemouth Questionnaire: a short-form comprehensive outcome measure. I. Psychometric properties in back pain patients. Journal of manipulative and physiological therapeutics, 22(8), 503-510. https://doi.org/10.1016/S0161-4754(99)70001-1 | Unknown | Unknown | Contact details unavailable, refer to original paper for permissions https://doi.org/10.1016/S0161-4754(99)70001-1 | Newell, D., Diment, E., & Bolton, J. E. (2016). An electronic patient-reported outcome measures system in UK chiropractic practices: a feasibility study of routine collection of outcomes and costs. Journal of manipulative and physiological therapeutics, 39(1), 31-41. https://doi.org/10.1016/j.jmpt.2015.12.001 | None identified in June 2019 | Recent validation in languages such as Dutch and German. |
| Musculoskeletal | Osteoarthritis | Osteoarthritis Quality Of Life | OAQoL | UK | 2008 | A 22 item measure of quality of life in osteoarthritis. | Unidimensional | Self-report | Construct validity, Rasch analysis, internal consistency and test-retest reliability have been demonstrated. | Keenan, A. M., Mckenna, S. P., Doward, L. C., Conaghan, P. G., Emery, P., & Tennant, A. (2008). Development and validation of a needs‐based quality of life instrument for osteoarthritis. Arthritis Care & Research: Official Journal of the American College of Rheumatology, 59(6), 841-848. doi: 10.1002/art.23714 | Yes | Unknown | http://www.galenresearch.com/measures-database/ | Huang, K. H., Hsieh, R. L., & Lee, W. C. (2015). Pain, physical function, and health in patients with knee osteoarthritis. Rehabilitation Nursing. https://doi.org/10.1002/rnj.234 | None identified in June 2019 | |
| Musculoskeletal | Osteoarthritis - hand | Australian/Canadian Osteoarthritis Hand Index | AUSCAN | Australia, Canada | 2002 | A 15 item measure of osteoarthritis in the hand which probes symptom severity in commonly experienced situations. It can be administered as Likert, VAS or NRS responses. | 3: Pain, stiffness, physical functioning | Self-report | Construct validity, internal consistency, and test-retest reliability have been demonstrated. | Bellamy, N., Campbell, J., Haraoui, B., Gerecz-Simon, E., Buchbinder, R., Hobby, K., & MacDermid, J. C. (2002). Clinimetric properties of the AUSCAN Osteoarthritis Hand Index: an evaluation of reliability, validity and responsiveness. Osteoarthritis and Cartilage, 10(11), 863-869. https://doi.org/10.1053/joca.2002.0838 | Yes | Unknown | http://www.auscan.org/auscan/index.htm | Cole, A., Gill, T. K., Taylor, A. W., & Hill, C. L. (2011). Prevalence and associations of hand pain in the community: results from a population-based study. Scandinavian journal of rheumatology, 40(2), 145-149. https://doi.org/10.3109/03009742.2010.508467 | Medication management and education of osteoarthritis patients: evaluation of a role for community pharmacists (2013): http://6cpa.com.au/wp-content/uploads/Medication-management-and-educati… | Originally validated in both French and English. |
| Musculoskeletal | Osteoarthritis - hand | Michigan Hand Outcomes Questionnaire | MHQ | USA | 1998 | A 37 item instrument assessing designed to measure health state domains important to patients with hand disorders. Can also be used to assess outcomes following surgery. It accounts for hand dominance in a number of scales. Also available in a short form (the Brief Michigan Hand Questionnaire; BMHQ). | 6: Overall hand function, activities of daily living, pain, work performance, aesthetics, and satisfaction with hand function | Self-report | Factor analysis, construct validity, internal consistency and test-retest reliability have been demonstrated. | Chung, K. C., Pillsbury, M. S., Walters, M. R., & Hayward, R. A. (1998). Reliability and validity testing of the Michigan Hand Outcomes Questionnaire. The Journal of hand surgery, 23(4), 575-587. https://doi.org/10.1016/S0363-5023(98)80042-7 | Yes | Yes, fees may apply | http://mhq.lab.medicine.umich.edu/faq | Waljee, J. F., & Chung, K. C. (2012). Objective functional outcomes and patient satisfaction after silicone metacarpophalangeal arthroplasty for rheumatoid arthritis. The Journal of hand surgery, 37(1), 47-54. https://doi.org/10.1016/j.jhsa.2011.09.042 | The long term consequences of stroke (2006): https://revalidatiegeneeskunde.nl/sites/default/files/attachments/Weten… | Available in numerous languages including Japanese, Chinese, and German. |
| Musculoskeletal | Osteoarthritis - hand | Patient-Reported Wrist Evaluation | PRWE | Canada | 1998 | A brief 15 item questionnaire measuring wrist pain and disability. There is also a modified wrist/had version (PRWHE). | 2: Pain, function | Self-report | Construct and criterion validity, and test-retest reliability have been demonstrated. | MacDermid, J. C., Turgeon, T., Richards, R. S., Beadle, M., & Roth, J. H. (1998). Patient rating of wrist pain and disability: a reliable and valid measurement tool. Journal of orthopaedic trauma, 12(8), 577-586. https://ovidsp.tx.ovid.com/sp-3.33.0b/ovidweb.cgi?QS2=434f4e1a73d37e8c6… | Unknown | Unknown | https://www.researchgate.net/profile/Joy_Macdermid | Nydick, J. A., Watt, J. F., Garcia, M. J., Williams, B. D., & Hess, A. V. (2013). Clinical outcomes of arthrodesis and arthroplasty for the treatment of posttraumatic wrist arthritis. The Journal of hand surgery, 38(5), 899-903. https://doi.org/10.1016/j.jhsa.2013.02.013 | None identified in June 2019 | |
| Musculoskeletal | Osteoarthritis - hip and knee | Animated Activity Questionnaire | AAQ | Europe: Denmark, France, Italy, The Netherlands, Norway, Spain, and UK | 2014 | An exclusively computer-based tool that determines how patients perform activities in daily life. Patients watch animated videos in which a person performs different activities (e.g., stair climbing) in several ways with each way exposing a different level of difficulty for the patient. They select the video that best represents their way of performing the activity. There are 17 items (activities), each with 4-6 video response options. | 17 activities: Ascending stairs, descending stairs, walking outside on a flat surface, walking outside on uneven terrain, walking inside: starting walking after at least 15 minutes sitting, ascending a bridge or small slope, descending a bridge or small slope, picking up an object from the floor, rising from the floor, rising from a chair, sitting down on a chair, rising from a sofa, sitting down on a sofa, rising from a toilet, sitting down on a toilet, putting on shoes, taking off shoes | Self-report | Construct validity and test-retest reliability have been demonstrated. | Terwee, C. B., Coopmans, C., Peter, W. F., Roorda, L. D., Poolman, R. W., Scholtes, V. A., ... & de Vet, H. C. (2014). Development and validation of the computer-administered animated activity questionnaire to measure physical functioning of patients with hip or knee osteoarthritis. Physical therapy, 94(2), 251-261. https://doi.org/10.2522/ptj.20120472 ; Peter, W. F., Loos, M., de Vet, H. C. W., Boers, M., Harlaar, J., Roorda, L. D., ... & Steultjens, M. (2015). Development and preliminary testing of a computerized animated activity questionnaire in patients with hip and knee osteoarthritis. Arthritis care & research, 67(1), 32-39. https://doi.org/10.1002/acr.22386 | Unknown | Unknown | Contact: W.F. Peter, w.peter@vumc.nl | None identified in June 2019 | None identified in June 2019 | Reliance primarily on animated video responses may mean the measure has greater transcultural applicability. Novel-use of video rather than just written items and responses. |
| Musculoskeletal | Osteoarthritis - hip and knee | Intermittent And Constant Osteoarthritis Pain Measure | ICOAP | Canada | 2008 | A measure consisting of 11 questions on constant versus intermittent pain. | 2: Intermittent pain, constant pain | Self-report | Principal component analysis, construct validity, internal consistency and test-retest reliability have been demonstrated. | Hawker, G. A., Davis, A. M., French, M. R., Cibere, J., Jordan, J. M., March, L., ... & Dieppe, P. (2008). Development and preliminary psychometric testing of a new OA pain measure–an OARSI/OMERACT initiative. Osteoarthritis and Cartilage, 16(4), 409-414. https://doi.org/10.1016/j.joca.2007.12.015 | Yes | Yes, fees may apply | https://www.oarsi.org/sites/default/files/docs/2013/icoap_users_guide_0… | Han, B. K., Kim, W., Niu, J., Basnyat, S., Barshay, V., Gaughan, J. P., ... & Felson, D. T. (2017). Association of chondrocalcinosis in knee joints with pain and synovitis: data from the osteoarthritis initiative. Arthritis care & research, 69(11), 1651-1658. https://doi.org/10.1002/acr.23208 | None identified in June 2019 | |
| Musculoskeletal | Osteoarthritis - hip and knee | Western Ontario And Mcmaster Universities Osteoarthritis Index | WOMAC | Canada | 1988 | A widely used 24 item measure of hip and knee osteoarthritis, using 5-point Likert, 100mm Visual Analogue or 11-box Numerical Rating Scale formats. | 3: Pain, stiffness, physical function | Self-report | Construct validity, internal consistency, and test-retest reliability have been demonstrated. | Bellamy, N., Buchanan, W. W., Goldsmith, C. H., Campbell, J., & Stitt, L. W. (1988). Validation study of WOMAC: a health status instrument for measuring clinically important patient relevant outcomes to antirheumatic drug therapy in patients with osteoarthritis of the hip or knee. The Journal of rheumatology, 15(12), 1833-1840. https://europepmc.org/abstract/med/3068365 | Yes | Unknown | http://www.womac.com/womac/index.htm | Cross, M., Smith, E., Hoy, D., Nolte, S., Ackerman, I., Fransen, M., ... & Laslett, L. L. (2014). The global burden of hip and knee osteoarthritis: estimates from the global burden of disease 2010 study. Annals of the rheumatic diseases, 73(7), 1323-1330. http://dx.doi.org/10.1136/annrheumdis-2013-204763 | Medication management and education of osteoarthritis patients: evaluation of a role for community pharmacists (2013): http://6cpa.com.au/wp-content/uploads/Medication-management-and-educati… | Available in over 100 languages. |
| Musculoskeletal | Osteoarthritis - shoulder | Brophy-Marx Shoulder Activity Scale | USA | 2005 | A brief (5 item) measure of patient shoulder activity, i.e., how often a patient engages in common activities such as weight lifting or handling objects overhead. It can be used to predict the outcomes of shoulder disorders. Responses are summed for an overall activity score. The scale has become known by this title (and a number of similar titles) because it was not given and explicit one by the authors. | 5 activities: Carrying an object 8 lb or heavier by hand, handling objects overhead, weight training with arms, swinging motion (i.e., hitting tennis or golf ball), and lifting objects 25 lb or heavier | Self-report | Construct validity and test-retest reliability have been demonstrated. | Brophy, R. H., Beauvais, R. L., Jones, E. C., Cordasco, F. A., & Marx, R. G. (2005). Measurement of shoulder activity level. Clinical Orthopaedics and Related Research®, 439, 101-108. doi: 10.1097/01.blo.0000173255.85016.1f | Unknown | Unknown | Contact: RH Brophy, brophyr@wudosis.wustl.edu | Brophy, R. H., Dunn, W. R., Kuhn, J. E., & MOON Shoulder Group. (2014). Shoulder activity level is not associated with the severity of symptomatic, atraumatic rotator cuff tears in patients electing nonoperative treatment. The American journal of sports medicine, 42(5), 1150-1154. https://doi.org/10.1177/0363546514526854 | None identified in June 2019 | ||
| Musculoskeletal | Osteoarthritis - shoulder | Western Ontario Osteoarthritis Shoulder | WOOS Index | Canada | 2001 | A 19 item VAS response measure of quality of life among patients with shoulder osteoarthritis. | 4: Pain and physical symptoms, sport, recreation and work, lifestyle function, emotional function | Self-report | Construct validity, discriminant validity, and test-retest reliability have been demonstrated. | Lo, I. K. Y., Griffin, S., & Kirkley, A. (2001). The development of a disease-specific quality of life measurement tool for osteoarthritis of the shoulder: The Western Ontario Osteoarthritis of the Shoulder (WOOS) index. Osteoarthritis and cartilage, 9(8), 771-778. doi:10.1053/joca.2001.0474 | Yes | Unknown | Contact: A Kirkley, akirkley@julian.uwo.ca | Morris, B. J., Laughlin, M. S., Elkousy, H. A., Gartsman, G. M., & Edwards, T. B. (2015). Preoperative opioid use and outcomes after reverse shoulder arthroplasty. Journal of shoulder and elbow surgery, 24(1), 11-16. https://doi.org/10.1016/j.jse.2014.05.002 | None identified in June 2019 | |
| Musculoskeletal | Physiotherapy, musculoskeletal conditions and injury | Outpatient Physical Therapy Improvement In Movement Assessment Log | OPTIMAL | USA | 2005 | Assesses the difficulty and confidence with which individuals are able to perform a range of mobility actions. | 2 dimensions, each with 3 subscales: Difficulty (upper extremity, lower extremity, and trunk), confidence (upper extremity, lower extremity, and trunk) | Self-report | Principal component analysis, discriminant and convergent validity, and internal consistency reliability have been demonstrated. | Guccione, A. A., Mielenz, T. J., DeVellis, R. F., Goldstein, M. S., Freburger, J. K., Pietrobon, R., ... & Carey, T. S. (2005). Development and testing of a self-report instrument to measure actions: outpatient physical therapy improvement in movement assessment log (OPTIMAL). Physical therapy, 85(6), 515-530. https://doi.org/10.1093/ptj/85.6.515, Also see: https://www.sralab.org/rehabilitation-measures/outpatient-physical-ther… | Yes | No | https://apmspineandsports.com/wp-content/uploads/2017/02/OPTIMAL-tool.p… | Freund, J. E., & Stetts, D. M. (2010). Use of trunk stabilization and locomotor training in an adult with cerebellar ataxia: a single system design. Physiotherapy Theory and Practice, 26(7), 447-458. doi: 10.3109/09593980903532234 | Recovery from Central Cord Syndrome: A Case Report (2015): https://sophia.stkate.edu/cgi/viewcontent.cgi?article=1041&context=dpt_… | Translated into Spanish, Italian. |
| Musculoskeletal | Rheumatoid arthritis | Activity Participation Questionnaire | APaQ | Canada | 2009 | A simple 2 item measure of activity participation in rheumatoid arthritis asking about number of days a patient is unable to perform one's usual activities due to their condition and a score measuring how often one's usual activities could be completed. | Unidimensional | Self-report | Construct validity, internal consistency, and test-retest reliability have been demonstrated. | Li, T., Wells, G., Westhovens, R., & Tugwell, P. (2009). Validation of a simple activity participation measure for rheumatoid arthritis clinical trials. Rheumatology, 48(2), 170-175. https://doi.org/10.1093/rheumatology/ken448 | Unknown | Unknown | Contact: T Li, tracy.li@bms.com | Li, T., Wells, G., Westhovens, R., Emery, P., Becker, J. C., & Tugwell, P. (2011). Improvements in participation in usual daily activities in patients with rheumatoid arthritis treated with abatacept. Value in Health, 14(2), 361-370. https://doi.org/10.1016/j.jval.2010.10.008 | None identified in June 2019 | |
| Musculoskeletal | Rheumatoid arthritis | Arthritis Impact Measurement Scale (Revised And Expanded Version) | AIMS2 | USA | 1992 | The original AIMS was developed in 1982, but the revised and expanded version (AIMS2) is now in wider use. This 78 item instrument measures health status in rheumatoid arthritis, including evaluating arm function, work, and social support. A short form of the AIMS2 has also been developed. It is also used for other conditions included: psoriatic arthritis, ankylosing spondylitis, fibromyalgia, carpal tunnel syndrome, colles fracture, haemophilia and in patients undergoing joint replacement surgery. | 12: Mobility level, Walking and bending, hand and finger function, arm function, self-care, household tasks, social activities, support from family and friends, arthritis pain, work, level of tension, mood | Self-report | Concurrent validity, internal consistency, and test-retest reliability have been demonstrated. | Meenan, R. F., Mason, J. H., Anderson, J. J., Guccione, A. A., & Kazis, L. E. (1992). AIMS2. The content and properties of a revised and expanded Arthritis Impact Measurement Scales Health Status Questionnaire. Arthritis & Rheumatism: Official Journal of the American College of Rheumatology, 35(1), 1-10. https://onlinelibrary.wiley.com/doi/pdf/10.1002/art.1780350102 | No | No | Contact: Robert F. Meenan, rmwwnan@bu.edu | Fusama, M., Nakahara, H., Hamano, Y., Nishide, M., Kawamoto, K., Hosokawa, T., ... & Kuroiwa, T. (2013). Improvement of health status evaluated by Arthritis Impact Measurement Scale 2 (AIMS-2) and Short Form-36 (SF-36) in patients with rheumatoid arthritis treated with tocilizumab. Modern rheumatology, 23(2), 276-283. doi: 10.1007/s10165-012-0674-1 | None identified in June 2019 | |
| Musculoskeletal | Rheumatoid arthritis | Bristol Rheumatoid Arthritis Fatigue Multi-Dimensional Questionnaire | BRAF_MDQ | UK | 2010 | A 20 item measure of fatigue in rheumatoid arthritis, mostly comprised of Likert style responses. | 4: Physical fatigue, living with fatigue, cognitive fatigue, emotional fatigue | Self-report | Exploratory factor analysis, criterion and construct validity, and internal consistency reliability have been demonstrated. | Nicklin, J., Cramp, F., Kirwan, J., Greenwood, R., Urban, M., & Hewlett, S. (2010). Measuring fatigue in rheumatoid arthritis: A cross‐sectional study to evaluate the bristol rheumatoid arthritis fatigue multi‐dimensional questionnaire, visual analog scales, and numerical rating scales. Arthritis care & research, 62(11), 1559-1568. https://doi.org/10.1002/acr.20282 | Unknown | Unknown | Contact: Sarah Hewlett, sarah.hewlett@uwe.ac.uk | Feldthusen, C., Grimby-Ekman, A., Forsblad-d’Elia, H., Jacobsson, L., & Mannerkorpi, K. (2016). Seasonal variations in fatigue in persons with rheumatoid arthritis: a longitudinal study. BMC musculoskeletal disorders, 17(1), 59. https://doi.org/10.1186/s12891-016-0911-4 | National rheumatoid arthritis society - Rheumatoid arthritis and chronic fatigue survey (2014): https://www.nras.org.uk/data/files/Get%20Involved/RAAW/Invisible%20Dise… | |
| Musculoskeletal | Rheumatoid arthritis | Effective Musculoskeletal Consumer Scale | EC-17 | Australia, Canada | 2007 | A 17 item self-administered questionnaire for evaluating self-management interventions that empower and educate people with rheumatic conditions. Items relate to knowledge, attitudes and behaviours about self-management skills. The survey has been translated into Dutch, Norwegian, and Spanish. | Unidimensional | Self-report | Classical and item response theory demonstrated good reliability and validity. | Kristjansson, E., Tugwell, P. S., Wilson, A. J., Brooks, P. M., Driedger, S. M., Gallois, C., ... & Wells, G. A. (2007). Development of the effective musculoskeletal consumer scale. The Journal of rheumatology, 34(6), 1392-1400. http://www.jrheum.org/content/34/6/1392 | Unknown | Unknown | http://www.cgh.uottawa.ca/eng/effective_consumers.html | Hamnes, B., Mowinckel, P., Kjeken, I., & Hagen, K. B. (2012). Effects of a one week multidisciplinary inpatient self-management programme for patients with fibromyalgia: a randomised controlled trial. BMC musculoskeletal disorders, 13(1), 189. https://doi.org/10.1186/1471-2474-13-189 | Evaluation of the Arthritis Self Management Programme In Ireland at 6 and 12 months (2009): http://www.cgh.uottawa.ca/assets/documents/Ireland_evaluation_report_1_… | |
| Musculoskeletal | Rheumatoid arthritis | Health Assessment Questionnaire Disability Index | HAQ-DI | USA | 1980 | Among the first PROMs, it measures disability, and was originally developed for use in chronic conditions like rheumatic diseases. It assess difficulty with eight categories: Dressing and Grooming, Hygiene, Arising, Reach, Eating, Grip, Walking, Outside Activities While derived from a larger scale (HAQ), the Disability Index is now used most frequently and has the most evidence supporting validity. Also known as the Stanford Health Assessment Questionnaire, older versions of the HAQ have been supplanted by the PROMIS-HAQ. | 5: Death, discomfort, disability, drug (therapeutic) toxicity, and dollar cost. Pain VAS. | Self-report | principal component analysis, convergent validity, and test-retest reliability have been demonstrated. | Fries, J. F., Spitz, P., Kraines, R. G., & Holman, H. R. (1980). Measurement of patient outcome in arthritis. Arthritis & Rheumatism, 23(2), 137-145. doi: https://onlinelibrary.wiley.com/doi/pdf/10.1002/art.1780230202 Bruce, B., & Fries, J. F. (2005). The health assessment questionnaire (HAQ). Clinical and experimental rheumatology, 23(5), S14. https://www.researchgate.net/profile/James_Fries/publication/7494006_Th… |
Yes | Unknown | Contact: Dr. B. Bruce, bbruce@Stanford.edu | Cho, S. K., Sung, Y. K., Choi, C. B., Cha, H. S., Choe, J. Y., Chung, W. T., ... & Kim, T. J. (2012, August). Do patients with elderly-onset rheumatoid arthritis have severe functional disability?. In Seminars in arthritis and rheumatism (Vol. 42, No. 1, pp. 23-31). WB Saunders. doi: https://doi.org/10.1016/j.semarthrit.2012.02.004 | None identified in June 2019 | Adapted for use in over 60 languages. |
| Musculoskeletal | Rheumatoid arthritis | Rheumatoid Arthritis Impact Of Disease Scale | RAID | International: Estonia, Germany, Finland, France, Greece, Italy, The Netherlands, Norway, Spain, Romania, Turkey and the UK | 2011 | A 7 item measure comprising numerical rating scales assessing the impact of rheumatoid arthritis, taking into account pain, functional capacity, fatigue, physical and emotional wellbeing, quality of sleep and coping. | 7: Pain, sleep, coping/self-management, function, fatigue, emotional wellbeing, physical wellbeing | Self-report | Construct validity, internal consistency, and test-retest reliability have been demonstrated. | Gossec, L., Paternotte, S., Aanerud, G. J., Balanescu, A., Boumpas, D. T., Carmona, L., ... & Gogus, F. (2011). Finalisation and validation of the rheumatoid arthritis impact of disease score, a patient-derived composite measure of impact of rheumatoid arthritis: a EULAR initiative. Annals of the rheumatic diseases, 70(6), 935-942. http://dx.doi.org/10.1136/ard.2010.142901 | No | No | http://pitie-salpetriere.aphp.fr/psaid/raid_psaid_quest_home.php | None identified in June 2019 | None identified in June 2019 | |
| Musculoskeletal | Rheumatoid arthritis | Rheumatoid Arthritis Quality Of Life Questionnaire | RAQoL | Netherlands and UK | 1997 | A measure consisting of 30 statements about quality of life in rheumatoid arthritis, answered on using a yes/no response. It uses a needs-based model of quality of life, assuming life gains its quality from individuals having the capacity to satisfy their needs. | Unidimensional | Self-report | Construct validity, internal consistency, and test-retest reliability have been demonstrated. | De Jong, Z., Van der Heijde, D. M. F. M., McKenna, S. P., & Whalley, D. (1997). The reliability and construct validity of the RAQoL: a rheumatoid arthritis-specific quality of life instrument. British journal of rheumatology, 36(8), 878-883. https://watermark.silverchair.com/360878.pdf?token=AQECAHi208BE49Ooan9k… | Yes | Unknown | https://www.rtihs.org/form/contact-staff-member?staff_member=840&referr… | Saleem, B., Brown, A. K., Quinn, M., Karim, Z., Hensor, E. M., Conaghan, P., ... & Emery, P. (2012). Can flare be predicted in DMARD treated RA patients in remission, and is it important? A cohort study. Annals of the rheumatic diseases, 71(8), 1316-1321. doi: 10.1136/annrheumdis-2011-200548 | None identified in June 2019 | Adapted for use in more than 24 languages. |
| Musculoskeletal | Rheumatoid arthritis | Rheumatoid Arthritis Symptom Questionnaire | RASQ | USA | 2017 | A 8 item measure assessing the cardinal signs and symptoms of rheumatoid arthritis (Joint pain, joint swelling, joint stiffness, joint tenderness, joint warmth, muscle pain, tiredness, and overall limitation on daily activities) suitable across multiple contexts. | Unidimensional | Self-report | Convergent and known groups validity, internal consistency, and test-retest reliability have been demonstrated. | Banderas, B., Skup, M., Shields, A. L., Stokes, J., Foley, C., & Ganguli, A. (2017). Psychometric evaluation of the Rheumatoid Arthritis Symptom Questionnaire (RASQ) in an observational study. Current medical research and opinion, 33(12), 2121-2128. https://doi.org/10.1080/03007995.2017.1338562 | Unknown | Unknown | Contact: Benjamin Banderas, benjamin.banderas@adelphivalues.com | None identified in June 2019 | None identified in June 2019 | |
| Musculoskeletal | Rheumatoid arthritis | Rheumatoid Arthritis-Work Instability Scale | RA-WIS | UK | 2003 | A 23 item measure for patients with rheumatoid arthritis of work instability, caused by a mismatch between an individual's functional abilities and the demands of their job which threatens their employment. | Unidimensional | Self-report | Criterion, discriminant and construct validity have been demonstrated. | Gilworth, G., Chamberlain, M. A., Harvey, A., Woodhouse, A., Smith, J., Smyth, M. G., & Tennant, A. (2003). Development of a work instability scale for rheumatoid arthritis. Arthritis Care & Research, 49(3), 349-354. doi: 10.1002/art.11114 | Yes | Unknown | Contact: RehabMed@leeds.ac.uk | van Vilsteren, M., Boot, C. R., Knol, D. L., van Schaardenburg, D., Voskuyl, A. E., Steenbeek, R., & Anema, J. R. (2015). Productivity at work and quality of life in patients with rheumatoid arthritis. BMC musculoskeletal disorders, 16(1), 107. https://doi.org/10.1186/s12891-015-0562-x | None identified in June 2019 | |
| Musculoskeletal | Rheumatoid arthritis | Routine Assessment Of Patient Index Data 3 | RAPID3 | USA | 2008 | RAPID3 or Routine Assessment of Patient Index Data 3 assesses the effect of arthritis on daily life. RAPID3 is designed to be quick and easy for the patient to complete. It was originally designed for patients with rheumatoid arthritis but is also used to address other pathologies such as psoriatic arthritis, osteoarthritis, spondyloarthropathies, lupus, and gout. | 3: Physical function, pain, patient global estimate | Self-report | Reliability, and convergent and discriminant validity have been demonstrated. | Pincus, T., Bergman, M. J., Yazici, Y., Hines, P., Raghupathi, K., & Maclean, R. (2008). An index of only patient-reported outcome measures, routine assessment of patient index data 3 (RAPID3), in two abatacept clinical trials: similar results to disease activity score (DAS28) and other RAPID indices that include physician-reported measures. Rheumatology, 47(3), 345-349. https://doi.org/10.1093/rheumatology/kem364 | Unknown | Unknown | Contact: Theodore Pincus, Rush University Medical Center, Chicago, United States of America | Castrejón, I., Bergman, M. J., & Pincus, T. (2013). MDHAQ/RAPID3 to recognize improvement over 2 months in usual care of patients with osteoarthritis, systemic lupus erythematosus, spondyloarthropathy, and gout, as well as rheumatoid arthritis. JCR: Journal of Clinical Rheumatology, 19(4), 169-174. doi: 10.1097/RHU.0b013e3182936b98 | None identified in June 2019 | |
| Musculoskeletal | Rheumatoid arthritis and musculoskeletal conditions | Evaluation Of Daily Activity Questionnaire | EDAQ | Sweden | 1996 | A detailed measure of activity limitation which includes questions on symptom severity, mood, life satisfaction and then ability to perform daily activities related to self-care and mobility such as eating and dressing (both with and without ergonomic solutions or assisted devices). Originally validated with individuals with rheumatoid arthritis. | 14 activity domains: Leisure and social, caring, gardening and house maintenance, moving outdoors and shopping, communication, moving and transfers, laundry and clothes care, cleaning the house, moving indoors, cooking, bathing and showering, dressing, in the bathroom and personal care, eating and drinking | Self-report | Confirmatory factor analysis, Rasch analysis for construct validity, concurrent and discriminant validity, internal consistency, and test-retest reliability have been demonstrated. | Swedish: Nordenskiöld, U., Grimby, G., Hedberg, M., Wright, B., & Linacre, J. M. (1996). The structure of an instrument for assessing the effects of assistive devices and altered working methods in women with rheumatoid arthritis. Arthritis & Rheumatism: Official Journal of the American College of Rheumatology, 9(5), 358-367. https://doi.org/10.1002/1529-0131(199610)9:5<358::AID-ANR1790090504>3.0… English version: Hammond, A., Tennant, A., Tyson, S. F., Nordenskiöld, U., Hawkins, R., & Prior, Y. (2015). The reliability and validity of the English version of the Evaluation of Daily Activity Questionnaire for people with rheumatoid arthritis. Rheumatology, 54(9), 1605-1615. https://doi.org/10.1093/rheumatology/kev008 | Yes | Yes, fees may apply | http://usir.salford.ac.uk/id/eprint/30752/8/EDAQ%20Manual%20v3%20A%20Ha… | Zanatta, E., Rodeghiero, F., Pigatto, E., Galozzi, P., Polito, P., Favaro, M., ... & Cozzi, F. (2017). Long-term improvement in activities of daily living in women with systemic sclerosis attending occupational therapy. British Journal of Occupational Therapy, 80(7), 417-422. doi: I: 10.1177/0308022617698167 | None identified in June 2019 | |
| Musculoskeletal | Shoulder surgery | Oxford Shoulder Score | OSS | UK | 1996 | A 12 item measure assessing the outcomes of shoulder surgery. Specifically, for assessing the impact of shoulder surgery on patients' quality of life for degenerative conditions such as arthritis or rotator cuff problems. | Unidimensional | Self-report | Construct validity, internal consistency, and test-retest reliability have been demonstrated. | Dawson, J., Fitzpatrick, R., & Carr, A. (1996). Questionnaire on the perceptions of patients about shoulder surgery. The Journal of bone and joint surgery. British volume, 78(4), 593-600. https://doi.org/10.1302/0301-620X.78B4.0780593 | Yes | Yes, fees may apply | https://innovation.ox.ac.uk/outcome-measures/oxford-shoulder-score-oss/ | Boyle, M. J., Youn, S. M., Frampton, C. M., & Ball, C. M. (2013). Functional outcomes of reverse shoulder arthroplasty compared with hemiarthroplasty for acute proximal humeral fractures. Journal of shoulder and elbow surgery, 22(1), 32-37. https://doi.org/10.1016/j.jse.2012.03.006 | None identified in June 2019 | Translated into numerous other languages. |
| Musculoskeletal | Spinal/back pain | Dallas Pain Questionnaire | DPQ | USA | 1989 | A 16 item measure, it assesses amount of chronic spinal pain affecting four aspects: daily and work-leisure activities, anxiety-depression, and social interest of the patients' lives. | 4: Daily activities, work-leisure activities, anxiety-depression, and social interest | Self-report | Factor analysis and concurrent validity were used for validation. | Lawlis, G. F., Cuencas, R. A. M. O. N., Selby, D., & McCoy, C. E. (1989). The development of the Dallas Pain Questionnaire. An assessment of the impact of spinal pain on behavior. Spine, 14(5), 511-516. https://europepmc.org/abstract/med/2524890 | Unknown | Unknown | Contact information not available | Ronzi, Y., Roche-Leboucher, G., Begue, C., Dubus, V., Bontoux, L., Roquelaure, Y., ... & Petit, A. (2017). Efficiency of three treatment strategies on occupational and quality of life impairments for chronic low back pain patients: is the multidisciplinary approach the key feature to success?. Clinical rehabilitation, 31(10), 1364-1373. https://doi.org/10.1177%2F0269215517691086 | None identified in June 2019 | |
| Musculoskeletal | Spine pain | Functional Rating Index | FRI | USA | 2001 | A 10 item measure designed to assess both function (activities of daily living) and pain. Ratings on the items may be totalled for and overall picture or used to build a profile of the nature of the dysfunction. | Unidimensional | Self-report | Construct validity, internal consistency, and test-retest reliability has been demonstrated. | Feise, R. J., & Menke, J. M. (2001). Functional rating index: a new valid and reliable instrument to measure the magnitude of clinical change in spinal conditions. Spine, 26(1), 78-87. https://ovidsp.tx.ovid.com/sp-3.33.0b/ovidweb.cgi?WebLinkFrameset=1&S=J… | Yes | Yes, fees may apply | https://www.chiroevidence.com/fri-license/ | Tuakli-Wosornu, Y. A., Terry, A., Boachie-Adjei, K., Harrison, J. R., Gribbin, C. K., LaSalle, E. E., ... & Lutz, G. E. (2016). Lumbar intradiskal platelet-rich plasma (PRP) injections: a prospective, double-blind, randomized controlled study. PM&R, 8(1), 1-10. https://doi.org/10.1016/j.pmrj.2015.08.010 | None identified in June 2019 | |
| Musculoskeletal | Upper limbs/extremities | Disabilities Of The Arm, Shoulder, And Hand | DASH | Australia, Canada, USA | 1996 | A region-specific scale for the upper extremities, the DASH assesses patients' symptoms (e.g., pain, numbness, and tingling) as well as disability in physical, social, and psychological areas. Shorter versions (the QuickDASH) have also been developed and well-validated. There are optional modules related to work and sports. | Unidimensional | Self-report | Reliability, validity and responsiveness has been demonstrated with adequate validation across various papers. | Marx, R. G., Bombardier, C., Hogg-Johnson, S., & Wright, J. G. (1999). Clinimetric and psychometric strategies for development of a health measurement scale. Journal of clinical epidemiology, 52(2), 105-111. https://doi.org/10.1016/S0895-4356(98)00148-6; See also: Beaton, D. E., Katz, J. N., Fossel, A. H., Wright, J. G., Tarasuk, V., & Bombardier, C. (2001). Measuring the whole or the parts?: Validity, reliability, and responsiveness of the disabilities of the arm, shoulder and hand outcome measure in different regions of the upper extremity. Journal of Hand Therapy, 14(2), 128-142. https://doi.org/10.1016/S0894-1130(01)80043-0 | Yes | Yes, fees may apply | http://www.dash.iwh.on.ca/licences | Grewal, R., Athwal, G. S., MacDermid, J. C., Faber, K. J., Drosdowech, D. S., El-Hawary, R., & King, G. J. (2012). Single versus double-incision technique for the repair of acute distal biceps tendon ruptures. A randomized clinical trial. Journal of Bone and Joint Surgery-A-American Volumes, 94(13), 1166. doi: 10.2106/JBJS.K.00436 | Upper limb disability and exposure to hand-arm vibration in selected industries (2008): http://www.hse.gov.uk/research/rrpdf/rr667.pdf | |
| Neurological | Alzheimer's disease | Progressive Deterioration Scale | PDS | USA | 1989 | A measure of patient ability to accomplish basic activities of daily living (ADL) in 11 areas and 29 items. This measure is specific to the quality of life of Alzheimer's disease patients. | Unidimensional | Proxy, caregiver reporting on behalf of patient | Construct validity has been demonstrated. | DeJong, R., Osterlund, O. W., & Roy, G. W. (1989). Measurement of quality-of-life changes in patients with Alzheimer's disease. Clinical therapeutics, 11(4), 545-554. https://europepmc.org/abstract/med/2776169 | Unknown | Unknown | Contact: R DeJong | Poirier, J., Delisle, M. C., Quirion, R., Aubert, I., Farlow, M., Lahiri, D., ... & Gilfix, B. M. (1995). Apolipoprotein E4 allele as a predictor of cholinergic deficits and treatment outcome in Alzheimer disease. Proceedings of the National Academy of Sciences, 92(26), 12260-12264. https://www.pnas.org/content/pnas/92/26/12260.full.pdf | None identified in June 2019 | |
| Neurological | Alzheimer's Disease | Disability Assessment For Dementia | DAD | Canada | 1999 | A 40 item measure of functional disability in community-dwelling persons with Alzheimer's disease. | 6: Basic activities of living, instrumental activities of daily living, leisure activities, initiation, planning and organisation, effective performance | Caregiver proxy | Construct and concurrent validity, internal consistency, interrater and test-retest reliability have been demonstrated. | Gélinas, I., Gauthier, L., McIntyre, M., & Gauthier, S. (1999). Development of a functional measure for persons with Alzheimer’s disease: the disability assessment for dementia. The American Journal of Occupational Therapy, 53(5), 471-481. https://web.a.ebscohost.com/ehost/detail/detail?vid=0&sid=a7d9109e-f6ef… See also: https://www.inesss.qc.ca/fileadmin/doc/INESSS/Rapports/Geriatrie/MA_TNC… |
Yes | Unknown | Contact: I Gelinas, isabelle.gelinas@mcgill.ca. See: https://www.inesss.qc.ca/fileadmin/doc/INESSS/Rapports/Geriatrie/MA_TNC… | Arrighi, H. M., Gélinas, I., McLaughlin, T. P., Buchanan, J., & Gauthier, S. (2013). Longitudinal changes in functional disability in Alzheimer's disease patients. International psychogeriatrics, 25(6), 929-937. doi:10.1017/S1041610212002360 | None identified in June 2019 | Validated simultaneously in English and French. |
| Neurological | Alzheimer's Disease and dementia | Alzheimer’s Disease-Related Quality Of Life Measure | ADRQOL | USA | 1999 | A 48 item measure of health related quality of life for patients with Alzheimer's disease, completed by their carers. | 5: Social integration, awareness of self, feelings and mood, enjoyment of activities and response to surroundings | Caregiver proxy | Convergent validity and internal consistency reliability have been demonstrated. | Rabins, P. V., Kasper, J. D., Kleinman, L., Black, B. S., & Patrick, D. L. (1999). Concepts and methods in the development of the ADRQL: an instrument for assessing health-related quality of life in persons with Alzheimer's disease. Journal of Mental Health and Aging.5, 33-48. https://psycnet.apa.org/record/1999-05045-004 | Yes | Unknown | Contact: P V Rabins, pvrabins@jhmi.edu | Miller, E. A., Schneider, L. S., & Rosenheck, R. A. (2009). Assessing the relationship between health utilities, quality of life, and health services use in Alzheimer's disease. International Journal of Geriatric Psychiatry: A journal of the psychiatry of late life and allied sciences, 24(1), 96-105. https://doi.org/10.2174/156720510791162386 | None identified in June 2019 | Translated into Japanese. |
| Neurological | Alzheimer's Disease and dementia | Quality Of Life In Alzheimer’s Disease | QOL-AD | USA | 1999 | A 13 item measure of quality of life for patients with Alzheimer's disease, which can be completed by the patient or proxy reported by a carer. | Unidimensional | Self-report, care-giver proxy | Convergent validity, internal consistency, and test-retest reliability have been demonstrated. | Logsdon, R. G., Gibbons, L. E., McCurry, S. M., & Teri, L. (1999). Quality of life in Alzheimer's disease: patient and caregiver reports. Journal of Mental health and Aging, 5, 21-32. https://www.researchgate.net/profile/Susan_Mccurry/publication/23241791… | Yes | Unknown | Contact: R Logsdon, Logsdon@u.washington.edu | Woods, R. T., Nelis, S. M., Martyr, A., Roberts, J., Whitaker, C. J., Markova, I., ... & Clare, L. (2014). What contributes to a good quality of life in early dementia? Awareness and the QoL-AD: a cross-sectional study. Health and quality of life outcomes, 12(1), 94. https://doi.org/10.1186/1477-7525-12-94 | Evaluation of the South Australia Innovation Hub Trial (2016): https://agedcare.health.gov.au/sites/g/files/net1426/f/documents/02_201… | Validated in Italian, Turkish and other languages. |
| Neurological | Dementia | Bath Assessment Of Quality of Life In Dementia | BASQID | UK | 2007 | A measure of self-reported quality of life (QoL) for people with mild to moderate dementia. | Unidimensional | Self-report | Construct validity and factor analysis have been demonstrated. | Trigg, R., Skevington, S. M., & Jones, R. W. (2007). How can we best assess the quality of life of people with dementia? The Bath Assessment of Subjective Quality of Life in Dementia (BASQID). The Gerontologist, 47(6), 789-797. https://doi.org/10.1093/geront/47.6.789 | Unknown | Unknown | Contact: Richard Trigg, Richard.trigg@ntu.ac.uk | Gräske, J., Fischer, T., Kuhlmey, A., & Wolf-Ostermann, K. (2012). Quality of life in dementia care–differences in quality of life measurements performed by residents with dementia and by nursing staff. Aging & Mental Health, 16(7), 819-827. https://doi.org/10.1080/13607863.2012.667782 | None identified in June 2019 | |
| Neurological | Dementia | Bristol Activities Of Daily Living Scale | BADLS | UK | 1996 | A 20 item questionnaire designed to measure the ability of someone with dementia to carry out daily activities such as dressing, preparing food and using transport. | 4: Instrumental activities of daily living, self care, orientation, mobility | Self-report | Principal components analysis was used for validation. | Bucks, R. S., Ashworth, D. L., Wilcock, G. K., & Siegfried, K. (1996). Assessment of activities of daily living in dementia: development of the Bristol Activities of Daily Living Scale. Age and ageing, 25(2), 113-120. https://doi.org/10.1093/ageing/25.2.113 | Unknown | Unknown | Contact: R. S. Bucks | Camic, P. M., Tischler, V., & Pearman, C. H. (2014). Viewing and making art together: a multi-session art-gallery-based intervention for people with dementia and their carers. Aging & Mental Health, 18(2), 161-168. https://doi.org/10.1080/13607863.2013.818101 | None identified in June 2019 | |
| Neurological | Dementia | DEMQOL | DEMQOL | UK | 2005 | A measure available as both a patient (28 item) and proxy (31 item) questionnaire, it assesses health-related quality of life in patients with dementia. | 5: Daily activities/looking after yourself, health and well-being, cognitive functioning, social relationships, and self-concept | Self-report, care-giver proxy | Exploratory factor analysis, convergent and discriminant validity, known group differences, internal consistency and test-retest reliability have been demonstrated. | Smith, S. C., Lamping, D. L., Banerjee, S., Harwood, R., Foley, B., Smith, P., ... & Mann, A. (2005). Measurement of health-related quality of life for people with dementia: development of a new instrument (DEMQOL) and an evaluation of current methodology. Health Technology Assessment (Winchester, England), 9(10), 1-93. http://researchonline.lshtm.ac.uk/13685/1/FullReport-hta9100.pdf | Yes | Unknown | https://www.bsms.ac.uk/research/neuroscience/cds/research/demqol.aspx | Trigg, R., Jones, R. W., Knapp, M., King, D., Lacey, L. A., & DADE‐2 Investigator Groups. (2015). The relationship between changes in quality of life outcomes and progression of Alzheimer's disease: results from the Dependence in AD in England 2 longitudinal study. International journal of geriatric psychiatry, 30(4), 400-408. doi: 10.1002/gps.4150 | An evaluation of the feasibility of the routine measurement of quality of life of people with dementia in care homes using DEMQOL-Proxy (2018): https://cris.brighton.ac.uk/ws/portalfiles/portal/5927477/Thesis_v2.4.p… | |
| Neurological | Dementia | Neuropsychiatric Inventory | NPI-10 | USA | 1994 | This measure assess the changes in patient behaviour that have appeared since the onset of the dementia. 10 item and 12 item versions available. | 10: Delusions, hallucinations, agitation/aggression, dysphoria, anxiety, euphoria, apathy, disinhibition, irritability/lability, and aberrant motor activity | Proxy, caregiver reporting on behalf of patient | Concurrent validity has been demonstrated. | Cummings, J. L., Mega, M., Gray, K., Rosenberg-Thompson, S., Carusi, D. A., & Gornbein, J. (1994). The Neuropsychiatric Inventory: comprehensive assessment of psychopathology in dementia. Neurology, 44(12), 2308-2308. https://doi.org/10.1212/WNL.44.12.2308 | Yes | Unknown | Contact: Jeffrey Cumming, cumminj@ccf.org | Fuh, J. L., & Wang, S. J. (2006). Assessing quality of life in Taiwanese patients with Alzheimer's disease. International Journal of Geriatric Psychiatry: A journal of the psychiatry of late life and allied sciences, 21(2), 103-107. https://doi.org/10.1002/gps.1425 | None identified in June 2019 | Available in 75 different languages including English, French, Spanish, Italian, German, Japanese, Russian, and Chinese. |
| Neurological | Depression in patients with epilepsy | Neurological Disorders Depression Inventory For Epilepsy | NDDI-E | USA | 2006 | A 6 item instrument assessing depression in patients with epilepsy. | Unidimensional | Self-report | Construct validity, internal consistency, and test-retest reliability have been demonstrated. | Gilliam, F. G., Barry, J. J., Hermann, B. P., Meador, K. J., Vahle, V., & Kanner, A. M. (2006). Rapid detection of major depression in epilepsy: a multicentre study. The Lancet Neurology, 5(5), 399-405. https://doi.org/10.1016/S1474-4422(06)70415-X | Unknown | Unknown | Contact: F G Gilliam, fgilliam@neuro.columbia.edu | Wahby, S., Karnik, V., Brobbey, A., Wiebe, S., Sajobi, T., & Josephson, C. B. (2019). Cannabis use is both independently associated with and mediates worse psychosocial health in patients with epilepsy. J Neurol Neurosurg Psychiatry, jnnp-2018. http://dx.doi.org/10.1136/jnnp-2018-319780 | None identified in June 2019 | Validated in multiple languages including Italian, Spanish and Portuguese. |
| Neurological | Dysarthria in Parkinson's disease | Communicative Effectiveness Survey | CES | USA | 2007 | A 10 item questionnaire focusing on social communication in patients with dysarthria secondary to Parkinson's disease. | Unidimensional | Self-report | Principal component analysis, Rasch analysis, construct validity (preliminary) and internal consistency have been demonstrated. | Donovan, N. J., Kendall, D. L., Young, M. E., & Rosenbek, J. C. (2008). The communicative effectiveness survey: Preliminary evidence of construct validity. American Journal of Speech-Language Pathology. https://doi.org/10.1044/1058-0360(2008/07-0010); See also: Donovan, N. J., Velozo, C. A., & Rosenbek, J. C. (2007). The Communicative Effectiveness Survey: Investigating its item-level psychometric properties. Journal of Medical Speech-Language Pathology, 15(4), 433-448. https://go.galegroup.com/ps/i.do?id=GALE%7CA172803452&sid=googleScholar… | Unknown | Unknown | Contact: N J Donovan, ndonovan@lsu.edu | McAuliffe, M. J., Carpenter, S., & Moran, C. (2010). Speech intelligibility and perceptions of communication effectiveness by speakers with dysarthria following traumatic brain injury and their communication partners. Brain Injury, 24(12), 1408-1415. https://www.tandfonline.com/doi/figure/10.3109/02699052.2010.511590?scr… | None identified in June 2019 | |
| Neurological | Epilepsy | Epilepsy Psycho-Social Effects Scale | EPSES | UK | 1990 | A 42 item instrument for measuring the social effects of epilepsy. | 21: Attitude towards accepting the attacks, attitude to the label "epilepsy", fear of having seizures, fear of stigma in employment, lack of confidence about the future, concern about performance at work, concern about sexual relationship, concern about platonic relationships, concern about housing, lack of confidence about travelling, adverse reaction on social life, adverse reaction on leisure pursuits, change of outlook on life/self, difficulty in communicating with the family, problems with taking medication, distrust of the medical profession, misconceptions about epilepsy, depression or emotional reactions, feelings of increased social isolation, lethargy/lack of energy, sleep disturbance | Self-report | Criterion validity and test-retest reliability have been demonstrated. | Chaplin, J. E., Yepez, R., Shorvon, S., & Floyd, M. (1990). A quantitative approach to measuring the social effects of epilepsy. Neuroepidemiology, 9(3), 151-158. https://www.karger.com/Article/PDF/110765 | Unknown | Unknown | Contact: J E Chaplin, john.chaplin@gu.se | Chaplin, J. E., Wester, A., & Tomson, T. (1998). The perceived rehabilitation needs of a hospital-based outpatient sample of people with epilepsy. Seizure, 7(4), 329-335. https://pdf.sciencedirectassets.com/272540/1-s2.0-S1059131100X00738/1-s… | None identified in June 2019 | |
| Neurological | Epilepsy | Impact Of Epilepsy Scale | UK | 1993 | A 7-12 item measure assessing the impact of epilepsy and antiepileptic drug therapy on an individual’s relationship with friends and family, social life, employment, health, self-esteem, plans for the future, and standard of living. It has also been used in adolescents with epilepsy and revised more recently. | 8: Relationship with spouse/partner, relationship with other close family members, social life/social activities, work, health, relationships with friends, feelings about self, plans and ambitions for the future. | Self-report | Factor analysis, construct validity, and internal consistency reliability have been demonstrated. | Jacoby, A., Baker, G., Smith, D., Dewey, M., & Chadwick, D. (1993). Measuring the impact of epilepsy: the development of a novel scale. Epilepsy research, 16(1), 83-88. https://doi.org/10.1016/0920-1211(93)90042-6 | Unknown | Unknown | Contact: A Jacoby, ajacoby@liv.ac.uk | Jacoby, A., Snape, D., Lane, S., & Baker, G. A. (2015). Self-reported anxiety and sleep problems in people with epilepsy and their association with quality of life. Epilepsy & Behavior, 43, 149-158. https://doi.org/10.1016/j.yebeh.2014.09.071 | None identified in June 2019 | ||
| Neurological | Epilepsy | Liverpool Seizure Severity Scale | LSSS 2.0 | UK | 2001 | This measure quantifies the patient's own perceptions of changes in seizure severity. Originally developed in 1991, then revised in 1998. The current version is the LSSS 2.0. | Unidimensional | Self-report | Factor analysis and construct validity have been demonstrated. | Baker, G. A., Smith, D. F., Dewey, M., Morrow, J., Crawford, P. M., & Chadwick, D. W. (1991). The development of a seizure severity scale as an outcome measure in epilepsy. Epilepsy Research, 8(3), 245-251. https://doi.org/10.1016/0920-1211(91)90071-M ; Scott-Lennox, J., Bryant-Comstock, L., Lennox, R., & Baker, G. A. (2001). Reliability, validity and responsiveness of a revised scoring system for the Liverpool Seizure Severity Scale. Epilepsy research, 44(1), 53-63. https://doi.org/10.1016/S0920-1211(01)00186-3 | Unknown | Unknown | Contact: Jane Scott-Lennox, jas-l@mindspring.com | Kverneland, M., Selmer, K. K., Nakken, K. O., Iversen, P. O., & Taubøll, E. (2015). A prospective study of the modified Atkins diet for adults with idiopathic generalized epilepsy. Epilepsy & Behavior, 53, 197-201. https://doi.org/10.1016/j.yebeh.2015.10.021 | None identified in June 2019 | |
| Neurological | Epilepsy | Quality Of Life In Epilepsy | QOLIE-10-P | USA | 1995 | Available in 89 item and shorter 31 and 10 item forms, this instrument measures quality of life for patients with epilepsy, focusing on an epilepsy targeted dimension, a cognitive factor, mental health, and physical health.. A version is also available for adolescent patients. | 17: Seizure worry, medication effects, health perceptions, health discouragement, work/driving/social function, language, attention/concentration, memory, overall quality of life, emotional wellbeing, role limitations: Emotional, role limitations: Physical, social isolation, social support, energy/fatigue, physical functioning, pain | Self-report, care-giver proxy | Exploratory factor analysis, construct validity, internal consistency, and test-retest reliability have been demonstrated. | Devinsky, O., Vickrey, B. G., Cramer, J., Perrine, K., Hermann, B., Meador, K., & Hays, R. D. (1995). Development of the quality of life in epilepsy inventory. Epilepsia, 36(11), 1089-1104. | No | No | https://www.rand.org/health-care/surveys_tools/qolie.html | Chou, C. C., Shih, Y. H., Yen, D. J., Kwan, S. Y., & Yu, H. Y. (2015). Long‐term health‐related quality of life in drug‐resistant temporal lobe epilepsy after anterior temporal lobectomy. Epileptic disorders, 17(2), 177-183. doi:10.1684/epd.2015.0744 | None identified in June 2019 | |
| Neurological | Epilepsy | Quality Of Life In Newly Diagnosed Epilepsy (Newly Diagnosed Epilepsy Quality Of Life) | NEWQOL-6D | UK, USA | 2000 | A self-assessment of quality of life in recently diagnosed epilepsy patients. The original version had 93 items and 13 subscales. | 6: worry about seizures, depression, memory, cognition, stigmatism, control | Self-report | Concurrent validity and known group validity have been demonstrated. | Abetz, L., Jacoby, A., Baker, G. A., & McNulty, P. (2000). Patient‐based assessments of quality of life in newly diagnosed epilepsy patients: validation of the NEWQOL. Epilepsia, 41(9), 1119-1128. https://doi.org/10.1111/j.1528-1157.2000.tb00317.x | Unknown | Unknown | Contact: Linda Abetz, Linda.Abetz@adelphi.co.uk | Jacoby, A., Sudell, M., Tudur Smith, C., Crossley, J., Marson, A. G., Baker, G. A., & SANAD Study Group. (2015). Quality‐of‐life outcomes of initiating treatment with standard and newer antiepileptic drugs in adults with new‐onset epilepsy: findings from the SANAD trial. Epilepsia, 56(3), 460-472. https://doi.org/10.1111/epi.12913 | None identified in June 2019 | |
| Neurological | Epilepsy | Subjective Handicap Of Epilepsy | SHE | UK | 1998 | Measure of handicap in people with epilepsy, based on the World Health Organization’s concept of handicap. | 6: Work and activities, social and personal, self-perception, physical, life-satisfaction, change | Self-report | Construct validity and factor analysis have been demonstrated. | O'Donoghue, M. F., Duncan, J. S., & Sander, J. W. (1998). The subjective handicap of epilepsy. A new approach to measuring treatment outcome. Brain: a journal of neurology, 121(2), 317-343. https://doi.org/10.1093/brain/121.2.317 | Unknown | Unknown | Contact: M. F. O’Donoghue | Elliott, I., Kadis, D. S., Lach, L., Olds, J., McCleary, L., Whiting, S., ... & Smith, M. L. (2012). Quality of life in young adults who underwent resective surgery for epilepsy in childhood. Epilepsia, 53(9), 1577-1586. https://doi.org/10.1111/j.1528-1167.2012.03594.x | None identified in June 2019 | |
| Neurological | Epilepsy and other neurological conditions | Neurology Quality Of Life Measurement System | Neuro-QoL | USA | 2012 | A National Institute of Health (NIH) managed system consisting of 17 measures (including 13 calibrated item banks, 3 item pools available for calibration work by others, and 1 stand-alone scale) of health related quality of life in patients with epilepsy. Similar to PROMIS, it relies on item response theory and computerised adaptive testing to give an individualised picture for patients completing the survey. Measures for children have also been developed. Ongoing development includes short forms and validation in other common neurological conditions such as multiple sclerosis. | 17: Physical (Upper extremity function-fine motor, ADL, Lower extremity function-mobility, Bowel function, Urinary/Bladder function, Sexual function, Fatigue, Sleep disturbance), Mental (Depression, Anxiety, Stigma, Positive affect and well-being, Emotional and behavioural dyscontrol, End of life concerns, Applied cognition-general concerns, Applied cognition-executive function, Communication), Social (Ability to participate in social roles and activities, Satisfaction with social roles and activities) | Self-report, parent proxy, caregiver proxy | Exploratory factor analysis/confirmatory factor analysis, convergent validity, item bank correlations and test-retest reliability have been demonstrated. | Gershon, R. C., Lai, J. S., Bode, R., Choi, S., Moy, C., Bleck, T., ... & Cella, D. (2012). Neuro-QOL: quality of life item banks for adults with neurological disorders: item development and calibrations based upon clinical and general population testing. Quality of Life Research, 21(3), 475-486. https://doi.org/10.1007/s11136-011-9958-8 ; See also: Victorson, D., Cavazos, J. E., Holmes, G. L., Reder, A. T., Wojna, V., Nowinski, C., ... & Cella, D. (2014). Validity of the Neurology Quality-of-Life (Neuro-QoL) measurement system in adult epilepsy. Epilepsy & Behavior, 31, 77-84. https://doi.org/10.1016/j.yebeh.2013.11.008 | No | No | http://www.healthmeasures.net/explore-measurement-systems/neuro-qol | Bega, D., Stein, J., Zadikoff, C., Simuni, T., & Corcos, D. (2016). Yoga versus resistance training in mild to moderate severity Parkinson’s disease: a 12-week pilot study. J Yoga & Physical Therapy, 6, 222. doi: 10.4172/2157-7595.1000222 | Neuro-QoL Technical Report Development and Initial Validation of Patient-reported Item Banks for use in Neurological Research and Practice (2015): http://www.healthmeasures.net/images/neuro_qol/Neuro-QoL_Manual_Technic… | |
| Neurological | Migraine | Functional Assessment In Migraine Questionnaire | FAIM | USA, Germany, Campbell and Fiske’s Multitrait/Multimethod analysis (akin to internal consistency) | 2005 | A migraine functional assessment measure. It has some flexibility as it can be administered as a 9 item tool to measure dimensions of Attention/Thought and Perception, with an Activity and Participation item list to allow respondents to identify five additional items of personal relevance. | 5: Perception, attention/thought, activity and participation | Self-report | Principal component analysis/confirmatory factor analysis, and construct validity have been demonstrated. | Pathak, D. S., Chisolm, D. J., & Weis, K. A. (2005). Functional Assessment in Migraine (FAIM) questionnaire: development of an instrument based upon the WHO's International Classification of Functioning, Disability, and Health. Value in health, 8(5), 591-600. https://doi.org/10.1111/j.1524-4733.2005.00047.x | Unknown | Unknown | Contact: D J Chisolm, chisolmd@pediatrics.ohio-state.edu | Nett, R. B., Tiseo, P. J., Almas, M., & Sikes, C. R. (2007). Patient satisfaction with eletriptan in the acute treatment of migraine in primary care. International journal of clinical practice, 61(10), 1677-1685. https://onlinelibrary.wiley.com/doi/pdf/10.1111/j.1742-1241.2007.01513.x | None identified in June 2019 | |
| Neurological | Migraine | Migraine Physical Function Impact Diary | MPFID | USA | 2017 | A 13 item measure filled out as a diary, it assesses assess the impacts of migraine on physical functioning, including physical ability, difficulty moving the head or moving the body, ability to perform everyday activities, and impact on social interaction. | 2: Everyday activities, physical impairment | Self-report | Exploratory factor analysis/confirmatory factor analysis, item response theory analysis, convergent and known group validity, internal consistency and test-retest reliability have been demonstrated. | Kawata, A. K., Hsieh, R., Bender, R., Shaffer, S., Revicki, D. A., Bayliss, M., ... & Hareendran, A. (2017). Psychometric evaluation of a novel instrument assessing the impact of migraine on physical functioning: the migraine physical function impact diary. Headache: The Journal of Head and Face Pain, 57(9), 1385-1398. https://doi.org/10.1111/head.13162 | Unknown | Unknown | Contact: A Kawata, Ariane.Kawata@evidera.com | None identified in June 2019 | None identified in June 2019 | |
| Neurological | Migraine | Migraine-Specific Quality Of Life Questionnaire | MSQ | USA | 1997 | A 16 item questionnaire assessing quality of life and long term impact in patients experiencing migraines. Other shorter versions are available. | 3: Role function-restrictive, role function-preventive, emotional function | Self-report | Criterion validity, construct (convergent and divergent) validity and internal consistency reliability have been demonstrated. | Jhingran, P., Osterhaus, J. T., Miller, D. W., Lee, J. T., & Kirchdoerfer, L. (1998). Development and validation of the migraine‐specific quality of life questionnaire. Headache: the journal of head and face pain, 38(4), 295-302. https://onlinelibrary.wiley.com/doi/pdf/10.1046/j.1526-4610.1998.380429… | Yes | Unknown | Copyright owned by Glaxo Wellcome Inc, specific contact details unknown | Kollewe, K., Escher, C. M., Wulff, D. U., Fathi, D., Paracka, L., Mohammadi, B., ... & Dressler, D. (2016). Long-term treatment of chronic migraine with OnabotulinumtoxinA: efficacy, quality of life and tolerability in a real-life setting. Journal of Neural Transmission, 123(5), 533-540. https://doi.org/10.1007/s00702-016-1539-0 | Australian Public Assessment Report for Botulinum toxin Type A (2011): https://www.tga.gov.au/sites/default/files/auspar-botox.pdf | |
| Neurological | Migraine | Patient Perception Of Migraine Questionnaire | PPMQ | USA | 2002 | A 15 item measure designed to assess patient satisfaction with migraine therapy. The measure was further validated in its revised form in 2006. | Unidimensional | Self-report | Principal component analysis, construct validity, item response theory analysis, internal consistency and test-retest reliability have been demonstrated. | Davis, K. H., Black, L., & Sleath, B. (2002). Validation of the patient perception of migraine questionnaire. Value in Health, 5(5), 422-430. https://doi.org/10.1046/J.1524-4733.2002.55120.x See also: Revicki, D. A., Kimel, M., Beusterien, K., Kwong, J. W., Varner, J. A., Ames, M. H., ... & Cady, R. K. (2006). Validation of the revised Patient Perception of Migraine Questionnaire: measuring satisfaction with acute migraine treatment. Headache: The Journal of Head and Face Pain, 46(2), 240-252. https://doi.org/10.1111/j.1526-4610.2006.00289.x |
Yes | Unknown | Copyright owned by GlaxoSmithKline, specific contact details unkown | Landy, S., DeRossett, S. E., Rapoport, A., Rothrock, J., Ames, M. H., McDonald, S. A., & Burch, S. P. (2007). Two double-blind, multicenter, randomized, placebo-controlled, single-dose studies of sumatriptan/naproxen sodium in the acute treatment of migraine: function, productivity, and satisfaction outcomes. Medscape General Medicine, 9(2), 53. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1994873/ | None identified in June 2019 | |
| Neurological | Mild cognitive impairment | Mild Cognitive Impairment Questionnaire | MCQ | UK | 2014 | A short instrument that assesses quality of life among individuals with mild cognitive impairment. | 2: Emotional effects, practical concerns | Self-report | Exploratory factor analysis, construct validity, internal consistency, and test-retest reliability have been demonstrated. | Dean, K., Jenkinson, C., Wilcock, G., & Walker, Z. (2014). The development and validation of a patient-reported quality of life measure for people with mild cognitive impairment. International psychogeriatrics, 26(3), 487-497. doi: 10.1017/S1041610213002251 Dean, K., Walker, Z. and Jenkinson, C., Data quality, floor and ceiling effects, and test–retest reliability of the Mild Cognitive Impairment Questionnaire. Patient Related Outcome Measures 2018:9 43–47. https://doi.org/10.1017/S1041610213002251 | Yes | Yes, fees may apply | https://innovation.ox.ac.uk/outcome-measures/mild-cognitive-impairment-… | None identified in June 2019 | None identified in June 2019 | Available in Spanish and Romanian. |
| Neurological | Mild-moderate dementia | Dementia Quality Of Life Instrument | D-QOL | USA | 1999 | A 29 item self-report measure of quality of life for patients with mild to moderate dementia. | 5: Sense of aesthetics (ability to appreciate beauty, nature, and surroundings), positive affect/humour, negative affect, feelings of belonging, and self-esteem | Self-report | Convergent and known group difference validity, internal consistency, and test-retest reliability have been demonstrated. | Brod, M., Stewart, A. L., Sands, L., & Walton, P. (1999). Conceptualization and measurement of quality of life in dementia: the dementia quality of life instrument (DQoL). The Gerontologist, 39(1), 25-36. https://doi.org/10.1093/geront/39.1.25 | Yes | Unknown | Copyright owned by Center for Clinical Aging Services Research of the UCSF/Goldman Institute on Aging, specfic contact details unknown | Lion, K. M., Szcześniak, D., Bulińska, K., Evans, S. B., Evans, S. C., Saibene, F. L., ... & Meiland, F. J. (2019). Do people with dementia and mild cognitive impairments experience stigma? A cross-cultural investigation between Italy, Poland and the UK. Aging & mental health, 1-9. https://doi.org/10.1080/13607863.2019.1577799 | None identified in June 2019 | Translated into French, Spanish, German, and Chinese. |
| Neurological | Parkinson's disease | Parkinson's Disease Quality Of Life Questionnaire | PDQ | UK | 1995 | A 39 item instrument assessing health status and the impact of Parkinson's disease. A number of shorter forms of the measure are also available. | 8: Mobility, activities of daily living, emotional wellbeing, stigma, social support, cognitions, communication, bodily discomfort | Self-report | Factor analysis, construct validity, internal consistency and test-retest reliability have been demonstrated. | Peto, V., Jenkinson, C., Fitzpatrick, R., & Greenhall, R. (1995). The development and validation of a short measure of functioning and well being for individuals with Parkinson's disease. Quality of life research, 4(3), 241-248. https://link.springer.com/content/pdf/10.1007/BF02260863.pdf See also: Peto, V., Jenkinson, C., & Fitzpatrick, R. (1998). PDQ-39: a review of the development, validation and application of a Parkinson’s disease quality of life questionnaire and its associated measures. Journal of neurology, 245(1), S10-S14. https://link.springer.com/content/pdf/10.1007/PL00007730.pdf |
Yes | Yes, fees may apply | https://innovation.ox.ac.uk/outcome-measures/parkinsons-disease-questio… | Skorvanek, M., Rosenberger, J., Gdovinova, Z., Nagyova, I., Saeedian, R. G., Groothoff, J. W., & Dijk, J. P. (2013). Apathy in elderly nondemented patients with Parkinson's disease: clinical determinants and relationship to quality of life. Journal of geriatric psychiatry and neurology, 26(4), 237-243. doi: 10.1177/0891988713500587 | Deep brain stimulation for the symptoms of Parkinson’s disease (2006): http://www.msac.gov.au/internet/msac/publishing.nsf/Content/AFC95DF9AD9… | |
| Neurological | Parkinson's disease - idiopathic | Parkinson's Impact Scale | PIMS | Canada | 1996 | A 10 item quality of life measurement instrument assessing the impact of idiopathic Parkinson's Disease on 10 aspects of a patient’s emotional, social and economic life. | 4: Psychological, social, physical and financial | Self-report | Factor analysis, construct validity, internal consistency and test-retest reliability were used for validation. | Calne, S., Schulzer, M., Mak, E., Guyette, C., Rohs, G., Hatchard, S., ... & Beaudet, L. (1996). Validating a quality of life rating scale for idiopathic parkinsonism: Parkinson's Impact Scale (PIMS). Parkinsonism & Related Disorders, 2(2), 55-61. https://doi.org/10.1016/1353-8020(95)00026-7 | No | No | Contact information not available | Serrano‐Dueñas, M., Calero, B., Serrano, S., Serrano, M., & Coronel, P. (2010). Metric properties of the mini‐mental Parkinson and SCOPA‐COG scales for rating cognitive deterioration in Parkinson's disease. Movement Disorders, 25(15), 2555-2562. doi: 10.1002/mds.23322 | None identified in June 2019 | |
| Oral | Oral health and disorders | Subjective Oral Health Status Indicators | Canada | 1994 | Developed to measure the functional, social and psychological outcomes of oral disorders and conditions. It comprises 4 indexes and a scale (with multiple subscales). | 8: Chewing capacity, ability to speak clearly, oral and facial pain symptoms, other oral symptoms, social and psychological impact of oral disorders (problems with eating, problems with communication/social relations, other limitations in daily activities, worry and concern about oral health) | Self-report | Construct and concurrent validity, internal consistency, and test-retest reliability have been demonstrated. | Locker, D., & Miller, Y. (1994). Evaluation of subjective oral health status indicators. Journal of public health dentistry, 54(3), 167-176. https://doi.org/10.1111/j.1752-7325.1994.tb01209.x See also: https://www.adelaide.edu.au/arcpoh/downloads/publications/reports/misce… |
Unknown | Unknown | Contact: D Locker, dlocker@dental.utoronto.ca | Locker, D. (2009). Self‐esteem and socioeconomic disparities in self‐perceived oral health. Journal of public health dentistry, 69(1), 1-8. https://onlinelibrary.wiley.com/doi/pdf/10.1111/j.1752-7325.2008.00087.x | None identified in June 2019 | ||
| Oral | Oral health in older persons | Geriatric Oral Health Assessment Index | GOHAI | USA | 1990 | A 12 item assessment index for oral health in older adults, sensitive to issues of minor impairment. | 3: Physical function, psychosocial function, and pain/discomfort | Self-report | Construct validity and internal consistency have been demonstrated. | Atchison, K. A., & Dolan, T. A. (1990). Development of the geriatric oral health assessment index. Journal of dental education, 54(11), 680-687. http://www.jdentaled.org/content/54/11/680?ref=HadiZayifla.Com | Unknown | Unknown | Contact: K A Atchison, katchison@conet.ucla.edu | Ribeiro, G. R., Costa, J. L. R., Ambrosano, G. M. B., & Garcia, R. C. M. R. (2012). Oral health of the elderly with Alzheimer's disease. Oral surgery, oral medicine, oral pathology and oral radiology, 114(3), 338-343. https://doi.org/10.1016/j.oooo.2012.03.028 | None identified in June 2019 | Validated in numerous other languages and countries including Poland, the Netherlands and India. |
| Oral | Recurrent aphthous stomatitis | Oral Health Impact Profile-14 | OHIP | Australia | 1994 | A measure assessing dysfunction, discomfort and disability attributed to oral conditions. Originally developed as a 49 item questionnaire, it has also been validated in a 14 item short form. Other versions have been modified for more specific oral health issues. | 7: Functional limitation, physical pain, psychological discomfort, physical disability, psychological disability, social disability, and handicap | Self-report | Factor analysis, construct validity, internal consistency and test-retest reliability have been demonstrated. | Slade, G. D., & Spencer, A. J. (1994). Development and evaluation of the oral health impact profile. Community dental health, 11(1), 3-11. https://eprovide.mapi-trust.org/instruments/oral-health-impact-profile/… See also: Slade, G. D. (1997). Derivation and validation of a short‐form oral health impact profile. Community dentistry and oral epidemiology, 25(4), 284-290. Slade, G. D. (1997). Derivation and validation of a short‐form oral health impact profile. Community dentistry and oral epidemiology, 25(4), 284-290.x |
No | No | https://eprovide.mapi-trust.org/instruments/oral-health-impact-profile | Stober, T., Danner, D., Lehmann, F., Séché, A. C., Rammelsberg, P., & Hassel, A. J. (2012). Association between patient satisfaction with complete dentures and oral health-related quality of life: two-year longitudinal assessment. Clinical oral investigations, 16(1), 313-318. https://link.springer.com/article/10.1007/s00784-010-0483-x | Oral Health for Older People - Evaluation of the South Australian Dental Service project (2007): https://www.aihw.gov.au/getmedia/35d5e3c0-48cf-4817-9ddc-6f695a1d9eba/o… | Available in Japanese, Vietnamese, Arabic, Spanish and other languages. |
| Oral | Recurrent aphthous stomatitis | UK Oral Health Related Quality Of Life Measure | OHQOL-UK | UK | 2001 | A 16 item measure of the impact of oral health on quality of life. | 3: Physical aspects, social aspects, psychological aspects | Self-report | Construct, criterion validity, and internal consistency have been demonstrated. | McGrath, C., & Bedi, R. (2001). An evaluation of a new measure of oral health related quality of life-OHQoL-UK (W)©. Community dental health, 18(3), 138-143. https://www.researchgate.net/profile/Raman_Bedi2/publication/11768700_A… | Yes | Unknown | Contact: C P McGrath, mcgrathc@hku.hk | Jönsson, B., & Öhrn, K. (2014). Evaluation of the effect of non‐surgical periodontal treatment on oral health‐related quality of life: estimation of minimal important differences 1 year after treatment. Journal of clinical periodontology, 41(3), 275-282. https://doi.org/10.1111/jcpe.12202 | None identified in June 2019 | |
| Reproductive and Maternal | Endometriosis | Endometriosis Health Profile | EHP | UK | 2001 | A 30 item measure of dimensions of health related quality of life in women with endometriosis. In addition to the five scales, there are six modular parts covering: sexual intercourse, work, relationship with children, feelings about the medical profession, treatment, and infertility. A short form has also been developed. | 5: Pain, control and powerlessness, emotional well-being, social support, and self-image | Self-report | Construct validity, internal consistency, and test-retest reliability have been demonstrated. | Jones, G., Kennedy, S., Barnard, A., Wong, J., & Jenkinson, C. (2001). Development of an endometriosis quality-of-life instrument: The Endometriosis Health Profile-30. Obstetrics & Gynecology, 98(2), 258-264. https://doi.org/10.1016/S0029-7844(01)01433-8 | Yes | Yes, fees may apply | https://innovation.ox.ac.uk/outcome-measures/endometriosis-health-profi… | Cheong, Y. C., Reading, I., Bailey, S., Sadek, K., Ledger, W., & Li, T. C. (2014). Should women with chronic pelvic pain have adhesiolysis?. BMC women's health, 14(1), 36. https://doi.org/10.1186/s12905-017-0509-5 | None identified in June 2019 | Available in other languages such as Portuguese, Dutch and French. |
| Reproductive and Maternal | Endometriosis | Endometriosis Treatment Satisfaction Questionnaire | ETSQ | USA | 2010 | A 6 item measure of patients' level of satisfaction with their endometriosis treatment. | Unidimensional | Self-report | Principal component analysis/exploratory factor analysis, construct and known group difference validity, and internal consistency reliability have been demonstrated. | Deal, L. S., Williams, V. S., DiBenedetti, D. B., & Fehnel, S. E. (2010). Development and psychometric evaluation of the Endometriosis Treatment Satisfaction Questionnaire. Quality of Life Research, 19(6), 899-905. https://link.springer.com/article/10.1007/s11136-010-9640-6 | Yes | Unknown | Contact: L S Deal, linda.deal@Pfizer.com. Copyright held by Pfizer | None identified in June 2019 | None identified in June 2019 | |
| Reproductive and Maternal | Genetic Counselling | Genetic Counselling Outcomes Scale | GCOS | UK | 2011 | An outcome measure for clinical genetic services specifically focusing on an experience of empowerment among patients. | 7: Not reported | Self-report | Exploratory factor analysis, internal consistency, and concurrent validity have been demonstrated. | McAllister, M., Wood, A. M., Dunn, G., Shiloh, S., & Todd, C. (2011). The Genetic Counseling Outcome Scale: a new patient‐reported outcome measure for clinical genetics services. Clinical genetics, 79(5), 413-424. doi: https://doi.org/10.1111/j.1399-0004.2011.01636.x | Unknown | Unknown | Contact: Marion McAllister, marion.mcallister@manchester.ac.uk | Slomp, C., Morris, E., Inglis, A., Lehman, A., & Austin, J. (2018). Patient outcomes of genetic counseling: Assessing the impact of different approaches to family history collection. Clinical genetics, 93(4), 830-836. doi: 10.1111/cge.13176 | None identified in June 2019 | |
| Reproductive and Maternal | Heavy menstrual bleeding | Menorrhagia Impact Questionnaire | MIQ | USA | 2010 | A measure of the effect of menstrual blood loss (MBL) on various aspects of quality of life (QOL) of women with heavy menstrual bleeding (HMB). | 5: Perception of amount of blood loss, limitations in work outside or inside the home, limitations in physical activities, limitations in social or leisure activities, global assessment of change in blood loss | Self-report | Construct validity and test–retest reliability have been demonstrated. | Bushnell, D. M., Martin, M. L., Moore, K. A., Richter, H. E., Rubin, A., & Patrick, D. L. (2010). Menorrhagia Impact Questionnaire: assessing the influence of heavy menstrual bleeding on quality of life. Current medical research and opinion, 26(12), 2745-2755. DOI: 10.1185/03007995.2010.532200 | Unknown | Unknown | Contact information not available | Lukes, A. S., Muse, K., Richter, H. E., Moore, K. A., & Patrick, D. L. (2010). Estimating a meaningful reduction in menstrual blood loss for women with heavy menstrual bleeding. Current medical research and opinion, 26(11), 2673-2678. https://doi.org/10.1185/03007995.2010.526098 | None identified in June 2019 | |
| Reproductive and Maternal | Heavy menstrual bleeding | Menorrhagia Outcomes Questionnaire | MOQ | UK | 1998 | Patient based questionnaire for assessing the outcomes of surgical treatment for menorrhagia due to benign disease. | 4: Symptoms, post-operative complications, quality of life, and women's satisfaction with outcome | Self-report | Internal consistency, test-retest reliability, and criterion and construct validity have been demonstrated. | Lamping, D. L., Rowe, P., Clarke, A., Black, N., & Lessof, L. (1998). Development and validation of the menorrhagia outcomes questionnaire. BJOG: An International Journal of Obstetrics & Gynaecology, 105(7), 766-779. https://obgyn.onlinelibrary.wiley.com/doi/pdf/10.1111/j.1471-0528.1998… | No | Yes, fees may apply | Contact: D. Lamping, London School of Hygiene and Tropical Medicine | Vashisht, A., Studd, J. W. W., Carey, A. H., McCall, J., Burn, P. R., Healy, J. C., & Smith, J. R. (2000). Fibroid embolisation: a technique not without significant complications. BJOG: An International Journal of Obstetrics & Gynaecology, 107(9), 1166-1170. https://doi.org/10.1111/j.1471-0528.2000.tb11119.x | None identified in June 2019 | |
| Reproductive and Maternal | Heavy menstrual bleeding | Menorrhagia Questionnaire | MQ | UK | 1995 | Estimates the effect of menorrhagia on patients' perceived health status. | 1: Effects of menorrhagia on perceived health status | Self-report | Criterion validity, construct validity, and test-retest reliability have been demonstrated. | Ruta, D. A., Garratt, A. M., Chadha, Y. C., Flett, G. M., Hall, M. H., & Russell, I. T. (1995). Assessment of patients with menorrhagia: how valid is a structured clinical history as a measure of health status?. Quality of Life Research, 4(1), 33-40. https://link.springer.com/article/10.1007/BF00434381 | Unknown | Unknown | Contact information not available | Dreisler, E., Stampe Sorensen, S., Ibsen, P. H., & Lose, G. (2009). Prevalence of endometrial polyps and abnormal uterine bleeding in a Danish population aged 20–74 years. Ultrasound in Obstetrics and Gynecology: The Official Journal of the International Society of Ultrasound in Obstetrics and Gynecology, 33(1), 102-108. https://doi.org/10.1002/uog.6259 | A structured review of patient-reported outcome measures for people undergoing elective procedures for benign gynaecological conditions of the uterus (2010): http://phi.uhce.ox.ac.uk/pdf/ElectiveProcedures/PROMs_Oxford_Gynaecolog… | |
| Reproductive and Maternal | Heavy menstrual bleeding | Menstrual Bleeding Questionnaire | MBQ | USA | 2015 | MBQ is a comprehensive patient‐reported outcome (PRO) instrument for heavy menstrual bleeding. | 3: Heaviness, pain, quality of life | Self-report | Item reduction, content validity, and concurrent validity have been demonstrated. | Matteson, K. A., Scott, D. M., Raker, C. A., & Clark, M. A. (2015). The menstrual bleeding questionnaire: development and validation of a comprehensive patient‐reported outcome instrument for heavy menstrual bleeding. BJOG: An International Journal of Obstetrics & Gynaecology, 122(5), 681-689. doi: 10.1111/1471-0528.13273 | No | No | Contact information not available | Gonzalez, S. (2017). Assessing patient satisfaction levels following endometrial ablations in the treatment of abnormal uterine bleeding to determine effectiveness (Doctoral dissertation). | None identified in June 2019 | |
| Reproductive and Maternal | Maternity | Mother-Generated Index | MGI | Scotland | 2002 | Subjective assessment of postnatal quality of life. The measure does not provide a predefined checklist, but allows Mothers to identify areas of life affected by having a baby. | Single sheet, three-step questionnaire. Step 1: List up to eight areas in life affected by having a child, Step 2: Give score out of 10 for each area (how felt about), Step 3: Allocate 30 "spending points" across the areas. | Self-report | Concurrent validation has been demonstrated. | Symon, A., MacDonald, A., & Ruta, D. (2002). Postnatal quality of life assessment: introducing the Mother‐Generated Index. Birth, 29(1), 40-46. https://doi.org/10.1046/j.1523-536X.2002.00154.x | Unknown | Unknown | Contact information not available | Huang, K., Tao, F., Liu, L., & Wu, X. (2012). Does delivery mode affect women’s postpartum quality of life in rural China?. Journal of clinical nursing, 21(11‐12), 1534-1543. https://doi.org/10.1111/j.1365-2702.2011.03941.x | None identified in June 2019 | |
| Reproductive and Maternal | Maternity | Mother-To-Infant Bonding Scale | MIBS | UK | 2005 | A 8 item self-rating mother-to-infant bonding questionnaire to assess the feelings of a mother towards her new baby. | 2: Possessive, protective | Self-report | Principal components analysis used for validation. | Taylor, A., Atkins, R., Kumar, R., Adams, D., & Glover, V. (2005). A new Mother-to-Infant Bonding Scale: links with early maternal mood. Archives of Women’s Mental Health, 8(1), 45-51. https://link.springer.com/content/pdf/10.1007/s00737-005-0074-z.pdf | Unknown | Unknown | Contact: Alyx Taylor, alyx.taylor@tvu.ac.uk | Dubber, S., Reck, C., Müller, M., & Gawlik, S. (2015). Postpartum bonding: the role of perinatal depression, anxiety and maternal–fetal bonding during pregnancy. Archives of women's mental health, 18(2), 187-195. https://link.springer.com/article/10.1007/s00737-014-0445-4 | None identified in June 2019 | |
| Reproductive and Maternal | Mothers - birth | Birth Satisfaction Scale-Revised | BSS-R | UK | 2014 | A 10 item, five-point, Likert-type scale that measures women's perceptions of the birth experience. The original version was developed in 2011, and a revised version published in 2014. | 3: Quality of care provision, women's personal attributes, stress experienced during labour | Self-report | Factor analysis and known group validity were used for validation. | Hollins Martin, C., & Fleming, V. (2011). The birth satisfaction scale. International journal of health care quality assurance, 24(2), 124-135. https://doi.org/10.1108/09526861111105086; Martin, C. J. H., & Martin, C. R. (2014). Development and psychometric properties of the Birth Satisfaction Scale-Revised (BSS-R). Midwifery, 30(6), 610-619. https://doi.org/10.1016/j.midw.2013.10.006 | Unknown | Unknown | Contact: Caroline J. Hollins Martin, C.J.Hollins-Martin@salford.ac.uk | Hinic, K. (2016). Predictors of breastfeeding confidence in the early postpartum period. Journal of Obstetric, Gynecologic & Neonatal Nursing, 45(5), 649-660. https://doi.org/10.1016/j.jogn.2016.04.010 | None identified in June 2019 | |
| Reproductive and Maternal | Mothers - breastfeeding | Breastfeeding Self-Efficacy Scale | BSES | Canada | 1999 | A 33 item self report instrument to measure maternal breastfeeding confidence. A short-form is also available. | 2: Breastfeeding technique and intrapersonal thoughts | Self-report | Construct validity and factor analysis were used for validation. | Dennis, C. L., & Faux, S. (1999). Development and psychometric testing of the Breastfeeding Self‐Efficacy Scale. Research in nursing & health, 22(5), 399-409. https://doi.org/10.1002/(SICI)1098-240X(199910)22:5%3C399::AID-NUR6%3E3… | Unknown | Unknown | Contact: Cindy-Lee Dennis, cindylee.dennis@utoronto.ca | Li, T., Guo, N., Jiang, H., & Eldadah, M. (2018). Breastfeeding Self-Efficacy Among Parturient Women in Shanghai: A Cross-Sectional Study. Journal of Human Lactation, 0890334418812044. https://doi.org/10.1016/j.wombi.2013.09.004 | None identified in June 2019 | |
| Reproductive and Maternal | Pelvic floor disorders | Electronic Personal Assessment Questionnaire For Women With Pelvic Floor Disorders | EPAQ-PF | UK | 2006 | Web-based, electronic pelvic floor symptoms assessment questionnaire. Assessed self-reported symptoms and quality of life. | 4: Urinary, bowel, vaginal, sexual | Self-report | Factor analysis, reliability, construct validity, and criterion validity have been demonstrated. | Radley, S. C., Jones, G. L., Tanguy, E. A., Stevens, V. G., Nelson, C., & Mathers, N. J. (2006). Computer interviewing in urogynaecology: concept, development and psychometric testing of an electronic pelvic floor assessment questionnaire in primary and secondary care. BJOG: An International Journal of Obstetrics & Gynaecology, 113(2), 231-238. doi: 10.1111/j.1471-0528.2005.00820.x | Unknown | Unknown | http://www.epaq.co.uk | Jadav, A. M., Wadhawan, H., Jones, G. L., Wheldon, L. W., Radley, S. C., & Brown, S. R. (2013). Does sacral nerve stimulation improve global pelvic function in women?. Colorectal Disease, 15(7), 848-857. https://doi.org/10.1111/codi.12181 | None identified in June 2019 | |
| Reproductive and Maternal | Pelvic floor disorders | Pelvic Floor Distress Inventory | PFDI | USA | 2001 | The Pelvic Floor Distress Inventory (PFDI) and the Pelvic Floor Impact Questionnaire (PFIQ) are two complementary condition‐specific health‐related quality of life questionnaires for women with pelvic floor disorders. | 3: The UDI, the Pelvic Organ Prolapse Distress Inventory (POPDI), and the Colorectal–anal Distress Inventory (CRADI) | Self-report | Internal reliability, test–retest reliability, and validity (face validity, content validity, construct validity) have been demonstrated. | Barber, M. D., Kuchibhatla, M. N., Pieper, C. F., & Bump, R. C. (2001). Psychometric evaluation of 2 comprehensive condition-specific quality of life instruments for women with pelvic floor disorders. American journal of obstetrics and gynecology, 185(6), 1388-1395. https://doi.org/10.1067/mob.2001.118659 | Unknown | Unknown | Contact information not available | Nygaard, I., Brubaker, L., Zyczynski, H. M., Cundiff, G., Richter, H., Gantz, M., ... & Warren, L. K. (2013). Long-term outcomes following abdominal sacrocolpopexy for pelvic organ prolapse. Jama, 309(19), 2016-2024. https://doi.org/10.1016/j.jse.2014.05.002 | None identified in June 2019 | |
| Reproductive and Maternal | Pelvic floor disorders | Pelvic Floor Incontinence Questionnaire | PFIQ | USA | 2001 | The Pelvic Floor Distress Inventory (PFDI) and the Pelvic Floor Impact Questionnaire (PFIQ) are two complementary condition‐specific health‐related quality of life questionnaires for women with pelvic floor disorders. | 3: The Urinary Impact Questionnaire (UIQ), the Pelvic Organ Prolapse Impact Questionnaire (POPIQ), and the Colo-Rectal-Anal Impact Questionnaire (CRAIQ) | Self-report | Internal reliability, test–retest reliability, and validity (face validity, content validity, construct validity) have been demonstrated. | Barber, M. D., Kuchibhatla, M. N., Pieper, C. F., & Bump, R. C. (2001). Psychometric evaluation of 2 comprehensive condition-specific quality of life instruments for women with pelvic floor disorders. American journal of obstetrics and gynecology, 185(6), 1388-1395. https://doi.org/10.1067/mob.2001.118659 | Unknown | Unknown | Contact information not available | Paraiso, M. F. R., Jelovsek, J. E., Frick, A., Chen, C. C. G., & Barber, M. D. (2011). Laparoscopic compared with robotic sacrocolpopexy for vaginal prolapse: a randomized controlled trial. Obstetrics & Gynecology, 118(5), 1005-1013. doi: 10.1097/AOG.0b013e318231537c | None identified in June 2019 | |
| Reproductive and Maternal | Pelvic organ prolapse | Body Image In Pelvic Organ Prolapse | BIPOP | USA | 2014 | A measure to assess how prolapse affects a woman's body image. | 2: General attractiveness and prolapse-related reactions to partners | Self-report | Exploratory factor analysis, content validity, construct validity, tests of association and difference, and test-retest analyses have been demonstrated. | Lowder, J. L., Ghetti, C., Oliphant, S. S., Skoczylas, L. C., Swift, S., & Switzer, G. E. (2014). Body image in the Pelvic Organ Prolapse Questionnaire: development and validation. American journal of obstetrics and gynecology, 211(2), 174-e1. https://doi.org/10.1016/j.ajog.2014.03.019 | No | No | Contact information not available | Moroni, R. M., da Silva Lara, L. A., Ferreira, C. H. J., de Mello Constantino, M., & Brito, L. G. O. (2019). Assessment of Body Image, Sexual Function, and Attractiveness in Women With Genital Prolapse: A Cross-Sectional Study With Validation of the Body Image in the Pelvic Organ Prolapse (BIPOP) Questionnaire. The journal of sexual medicine, 16(1), 126-136. https://doi.org/10.1016/j.jsxm.2018.11.005 | None identified in June 2019 | |
| Reproductive and Maternal | Pelvic organ prolapse | Genital Self-Image Scale | GSIS | USA | 2003 & 2012 | The Genital Self-Image Scale (GSIS) is a 29 item scale designed to measure genital body image. | 2 parts: Both relating to feelings about genitals, first part is a Likert scale, second part is applies to me/does not apply to me | Self-report | Content validity, factor analysis, known group or contrasting groups approach, and reliability have been demonstrated. | Original (not very good validation study): Berman, L. A., Berman, J. E. N. N. I. F. E. R., Miles, M., Pollets, D. A. N., & Powell, J. A. (2003). Genital self-image as a component of sexual health: Relationship between genital self-image, female sexual function, and quality of life measures. Journal of Sex & Marital Therapy, 29(sup1), 11-21. doi: 10.1080/713847124 ; (Later validation study: Zielinski, R. E., Kane-Low, L., Miller, J. M., & Sampselle, C. (2012). Validity and reliability of a scale to measure genital body image. Journal of sex & marital therapy, 38(4), 309-324. https://doi.org/10.1080/0092623X.2011.569639) | Unknown | Unknown | Contact information not available | Zielinski, R., Miller, J., Low, L. K., Sampselle, C., & DeLancey, J. O. (2012). The relationship between pelvic organ prolapse, genital body image, and sexual health. Neurourology and urodynamics, 31(7), 1145-1148. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4902754/ | None identified in June 2019 | |
| Reproductive and Maternal | Pelvic organ prolapse | Prolapse Quality Of Life | P-QoL | UK | 2005 | Assesses the severity of symptoms and their impact on the quality of life in women with urogenital prolapse. | 9: General health, prolapse impact, role, physical limitations, social limitations, personal relationships, emotional problems, sleep/energy disturbance and symptom severity | Self-report | Construct validity, internal consistency, and test-retest reliability have been demonstrated. | Digesu, G. A., Khullar, V., Cardozo, L., Robinson, D., & Salvatore, S. (2005). P-QOL: a validated questionnaire to assess the symptoms and quality of life of women with urogenital prolapse. International Urogynecology Journal, 16(3), 176-181. DOI: 10.1007/s00192-004-1225-x | No | No | Contact information not available | Digesu, G. A., Chaliha, C., Salvatore, S., Hutchings, A., & Khullar, V. (2005). The relationship of vaginal prolapse severity tosymptoms and quality of life. BJOG: An International Journal of Obstetrics & Gynaecology, 112(7), 971-976. https://doi.org/10.1111/j.1471-0528.2005.00568.x | None identified in June 2019 | |
| Reproductive and Maternal | Polycystic ovary syndrome | Polycystic Ovary Syndrome Questionnaire | PCOSQ | USA | 1998 | a 26 item self-administered questionnaire for measuring health-related quality of life (HRQL) in women with polycystic ovary syndrome (PCOS). | 5: Emotions, body hair, weight, infertility, menstrual problems | Self-report | Factor analysis was used for validation. | Cronin, L., Guyatt, G., Griffith, L., Wong, E., Azziz, R., Futterweit, W., ... & Dunaif, A. (1998). Development of a health-related quality-of-life questionnaire (PCOSQ) for women with polycystic ovary syndrome (PCOS). The Journal of Clinical Endocrinology & Metabolism, 83(6), 1976-1987. https://doi.org/10.1210/jcem.83.6.4990 | Yes | Yes, fees may apply | Contact: MILO at McMaster University, milo@mcmaster.ca | McCook, J. G., Reame, N. E., & Thatcher, S. S. (2005). Health‐related quality of life issues in women with polycystic ovary syndrome. Journal of Obstetric, Gynecologic, & Neonatal Nursing, 34(1), 12-20. https://doi.org/10.1177/0884217504272945 | None identified in June 2019 | |
| Reproductive and Maternal | Transvaginal polypropylene mesh repair for pelvic organ prolapse | International Consultation On Incontinence Modular Questionnaire-Vaginal Symptoms | ICIQ-VS | UK | 2006 | Assesses the severity and impact of vaginal symptoms and related sexual matters. | 3: Vaginal symptoms, sexual matters, quality of life | Self-report | Content validity, construct validity, stability, internal consistency, sensitivity to change, and factor analysis have been demonstrated. | Price, N., Jackson, S. R., Avery, K., Brookes, S. T., & Abrams, P. (2006). Development and psychometric evaluation of the ICIQ Vaginal Symptoms Questionnaire: the ICIQ‐VS. BJOG: An International Journal of Obstetrics & Gynaecology, 113(6), 700-712. doi: 10.1111/j.1471-0528.2006.00938.x | Yes | No | Contact: Ms Nikki Gardener, nikki_gardener@bui.ac.uk - or ICIQ office: www.iciq.net or | Price, N., Slack, A., & Jackson, S. R. (2010). Laparoscopic hysteropexy: the initial results of a uterine suspension procedure for uterovaginal prolapse. BJOG: An International Journal of Obstetrics & Gynaecology, 117(1), 62-68. https://doi.org/10.1111/j.1471-0528.2009.02396.x | Incontinence in Australia (2013): https://www.aihw.gov.au/getmedia/0fc2a011-d290-42ef-a610-85073ef2909e/1… | |
| Reproductive and Maternal | Urogynaecology conditions | Pelvic Organ Prolapse/Incontinence Sexual Questionnaire | PISQ | USA | 1999 | 31 item questionnaire to evaluate sexual functioning in women with urinary incontinence or pelvic organ prolapse. | 3: Behavioural/emotive, physical, and partner-related | Self-report | Factor analysis, internal consistency, and correlation scores with other questionnaires were used for validation. | Rogers, R. G., Kammerer-Doak, D., Villarreal, A., Coates, K., & Qualls, C. (2001). A new instrument to measure sexual function in women with urinary incontinence or pelvic organ prolapse. American journal of obstetrics and gynecology, 184(4), 552-558. doi:10.1067/mob.2001.111100 | No | No | Contact information not available | Rogers, G. R., Villarreal, A., Kammerer-Doak, D., & Qualls, C. (2001). Sexual function in women with and without urinary incontinence and/or pelvic organ prolapse. International Urogynecology Journal, 12(6), 361-365. https://link.springer.com/article/10.1007/s001920170012 | None identified in June 2019 | |
| Reproductive and Maternal - Mental health | Postnatal depression | Edinburgh Postnatal Depression Scale | EPDS | UK | 1987 | A 10 item questionnaire developed to identify women with symptoms of emotional distress during pregnancy and the postnatal period. This is not a diagnostic tool. | Unidimensional | Self-report | Various forms of validity, such as sensitivity to change, has been demonstrated. | Cox, J. L., Holden, J. M., & Sagovsky, R. (1987). Detection of postnatal depression: development of the 10-item Edinburgh Postnatal Depression Scale. The British journal of psychiatry, 150(6), 782-786. https://doi.org/10.1192/bjp.150.6.782 ; Cox, J. L., Chapman, G., Murray, D., & Jones, P. (1996). Validation of the Edinburgh Postnatal Depression Scale (EPDS) in non-postnatal women. Journal of affective disorders, 39(3), 185-189. https://doi.org/10.1016/0165-0327(96)00008-0 | Unknown | Unknown | The Royal College of Psychiatrists | Wisner, K. L., Sit, D. K., McShea, M. C., Rizzo, D. M., Zoretich, R. A., Hughes, C. L., ... & Confer, A. L. (2013). Onset timing, thoughts of self-harm, and diagnoses in postpartum women with screen-positive depression findings. JAMA psychiatry, 70(5), 490-498. doi: 10.1001/jamapsychiatry.2013.87 | None identified in June 2019 | |
| Respiratory | Asthma | Asthma Control Questionnaire | ACQ | Canada | 1999 | Measures both the adequacy of asthma control and change in asthma control; occurring either spontaneously or as a result of treatment. The ACQ has 7 questions. Patients are asked to recall how their asthma has been during the previous week. Patient diary and electronic versions of the ACQ are also available. | Unidimensional | Self-report | Reliability, cross-sectional and longitudinal validity, and sensitivity to change have been demonstrated. | Juniper, E. F., O′ Byrne, P. M., Guyatt, G. H., Ferrie, P. J., & King, D. R. (1999). Development and validation of a questionnaire to measure asthma control. European respiratory journal, 14(4), 902-907. https://doi.org/10.1034/j.1399-3003.1999.14d29.x | Yes | Yes, fees may apply | http://www.qoltech.co.uk/ | Werner, C. U., Linde, K., Schäffner, J., Storr, C., & Schneider, A. (2017). Weekly self-measurement of FEV1 and PEF and its impact on ACQ (asthma control questionnaire)-scores: 12-week observational study with 76 patients. NPJ primary care respiratory medicine, 27(1), 64. https://www.nature.com/articles/s41533-017-0064-4 | Effectiveness and safety of bronchial thermoplasty in management of asthma (2017): https://effectivehealthcare.ahrq.gov/sites/default/files/pdf/cer-202-th… | The ASQ has been translated into many different languages. For the most current list of languages available, please check: www.qoltech.co.uk |
| Respiratory | Asthma | Asthma Control Test | ACT | USA | 2004 | A 5 item tool for identifying those with poorly controlled asthma. | Unidimensional | Self-report | Internal consistency, test-retest reliability, criterion validity, discriminant validity and responsiveness to change have been demonstrated. | Nathan, R. A., Sorkness, C. A., Kosinski, M., Schatz, M., Li, J. T., Marcus, P., ... & Pendergraft, T. B. (2004). Development of the asthma control test: a survey for assessing asthma control. Journal of Allergy and Clinical Immunology, 113(1), 59-65. https://doi.org/10.1016/j.jaci.2003.09.008 Schatz, M., Sorkness, C. A., Li, J. T., Marcus, P., Murray, J. J., Nathan, R. A., ... & Jhingran, P. (2006). Asthma Control Test: reliability, validity, and responsiveness in patients not previously followed by asthma specialists. Journal of Allergy and Clinical Immunology, 117(3), 549-556. https://doi.org/10.1016/j.jaci.2006.01.011 | Yes | No | https://www.asthmacontroltest.com/en-US/Intellectual-Property | Reddel, H. K., Sawyer, S. M., Everett, P. W., Flood, P. V., & Peters, M. J. (2015). Asthma control in Australia: a cross‐sectional web‐based survey in a nationally representative population. Medical Journal of Australia, 202(9), 492-496. https://doi.org/10.5694/mja14.01564 | None identified in June 2019 | The ACT has been translated into many different languages (93 translations). |
| Respiratory | Asthma | Asthma Life Impact Scale | ALIS | UK, USA | 2010 | A disease-specific patient reported outcome questionnaire which assesses the impact that asthma has on a patient’s quality of life. The scale has 22 items. | Unidimensional | Self-report | Internal consistency, test-retest reliability and convergent validity have been demonstrated. Rasch analysis was used for item reduction and provided support for the unidimensionality of the tool. | Meads, D. M., McKenna, S. P., Doward, L. C., Pokrzywinski, R., Revicki, D., Hunter, C., & Glendenning, G. A. (2010). Development and validation of the asthma life impact scale (ALIS). Respiratory medicine, 104(5), 633-643. https://doi.org/10.1016/j.rmed.2009.11.023 |
Yes | Yes, fees may apply | http://www.galen-research.com/measures-database/ | Rouse, M., Twiss, J., & McKenna, S. P. (2016). Co-calibrating quality-of-life scores from three pulmonary disorders: implications for comparative-effectiveness research. Journal of medical economics, 19(6), 596-603. https://doi.org/10.3111/13696998.2016.1148700 | None identified in June 2019 | The ALIS has been translated into 16 different languages, including Russian and Italian. |
| Respiratory | Asthma | Asthma Quality Of Life Questionnaire | AQLQ | UK | 1993 | A 32 item measure of functional impairments that are most troublesome to adult patients with asthma. The measure explores both the physical and emotional impacts of the disease. A 15 item version (MiniAQLQ) has also been developed. | 4: Symptoms, activity limitation, emotional function, and environmental stimuli | Self-report | Test-retest reproducibility, construct validity, and minimal important difference have been demonstrated. | Juniper, E. F., Guyatt, G. H., Ferrie, P. J., & Griffith, L. E. (1993). Measuring quality of life in asthma. American Review of Respiratory Disease, 147, 832-832. https://doi.org/10.1164/ajrccm/147.4.832 Juniper, E. F., Buist, A. S., Cox, F. M., Ferrie, P. J., & King, D. R. (1999). Validation of a standardized version of the Asthma Quality of Life Questionnaire. Chest, 115(5), 1265-1270. Juniper, E. F., Guyatt, G. H., Cox, F. M., Ferrie, P. J., & King, D. R. (1999). Development and validation of the mini asthma quality of life questionnaire. European Respiratory Journal, 14(1), 32-38. | Yes | Yes, fees may apply | http://www.qoltech.co.uk/ | Macaden, L., John, P., & Christopher, D. J. (2017). Quality of Life using AQLQ (S), ACT and GINA in patients with bronchial asthma in South India. Innovational Journal of Nursing and Healthcare, 3(2), 76-84. https://dspace.stir.ac.uk/handle/1893/25641#.XRBQcegzaUk | None identified in June 2019 | The ALIS has been translated into 16 different languages, including Mandarin and Spanish. |
| Respiratory | Asthma, Chronic obstructive pulmonary disease (COPD) | COPD And Asthma Sleep Impact Scale | CASIS | UK, USA | 2009 | The CASIS questionnaire is a self-administered 7 item scale evaluating sleep impairment associated with COPD and asthma. | 2: COPD, asthma | Self-report | Factor and item response theory analyses, internal consistency, test-retest reliability, convergent and discriminant validity have been demonstrated. | Pokrzywinski, R. F., Meads, D. M., McKenna, S. P., Glendenning, G. A., & Revicki, D. A. (2009). Development and psychometric assessment of the COPD and Asthma Sleep Impact Scale (CASIS). Health and quality of life outcomes, 7(1), 98. https://doi.org/10.1186/1477-7525-7-98 | Yes | No | https://hqlo.biomedcentral.com/articles/10.1186/1477-7525-7-98 | Basile, M., Baiamonte, P., Mazzuca, E., Principe, S., Pennavaria, F., Benfante, A., & Scichilone, N. (2018). Sleep Disturbances in COPD are Associated with Heterogeneity of Airway Obstruction. COPD: Journal of Chronic Obstructive Pulmonary Disease, 15(4), 350-354. https://doi.org/10.1080/15412555.2018.1504015 | None identified in June 2019 | |
| Respiratory | Asthma, Chronic obstructive pulmonary disease (COPD) | Patient Satisfaction And Preference Questionnaire | PASAPQ | USA | 2005 | A multi item measure of respiratory inhalation device satisfaction and preference designed to be easily understood and administered to patients with asthma and COPD. | 2: Performance, and Convenience | Self-report | Internal consistency, discriminant validity and responsiveness have been demonstrated. | Kozma, C. M., Slaton, T. L., Monz, B. U., Hodder, R., & Reese, P. R. (2005). Development and validation of a patient satisfaction and preference questionnaire for inhalation devices. Treatments in respiratory medicine, 4(1), 41-52. https://doi.org/10.2165/00151829-200504010-00005 | Unknown | Unknown | Contact: Brigitta.Monz@boehringer-ingelheim.com | Pascual, S., Feimer, J., De Soyza, A., Roig, J. S., Haughney, J., Padullés, L., ... & Chrystyn, H. (2015). Preference, satisfaction and critical errors with Genuair and Breezhaler inhalers in patients with COPD: a randomised, cross-over, multicentre study. NPJ primary care respiratory medicine, 25, 15018. http://dx.doi.org/10.1038/npjpcrm.2015.18 | None identified in June 2019 | |
| Respiratory | Chronic obstructive pulmonary disease | London Chest Activity Of Daily Living Scale | LCADL | UK | 2000 | A measure of dyspnoea during daily activities in patients with severe chronic obstructive pulmonary disease. | Unidimensional | Self-report | Construct validity, concurrent validity, and item reduction have been demonstrated. | Garrod, R., Bestall, J. C., Paul, E. A., Wedzicha, J. A., & Jones, P. W. (2000). Development and validation of a standardized measure of activity of daily living in patients with severe COPD: the London Chest Activity of Daily Living scale (LCADL). Respiratory medicine, 94(6), 589-596. https://doi.org/10.1053/rmed.2000.0786 | Unknown | Unknown | Contact: j.a.wedzicha@mds.qmw.ac.uk | García-Polo, C., Alcázar-Navarrete, B., Ruiz-Iturriaga, L. A., Herrejón, A., Ros-Lucas, J. A., García-Sidro, P., ... & Mayoralas-Alises, S. (2012). Factors associated with high healthcare resource utilisation among COPD patients. Respiratory medicine, 106(12), 1734-1742. https://doi.org/10.1016/j.rmed.2012.09.009 | None identified in June 2019 | |
| Respiratory | Chronic obstructive pulmonary disease (COPD) | Breathlessness, Cough And Sputum Scale | BCSS | USA | 2003 | A 3 item patient-reported outcome measure that asks patients to rate the severity of the three symptoms (breathing, cough and sputum) in a daily diary. | Unidimensional | Self-report | Internal consistency and reproducibility and convergent and discriminant validity have been demonstrated. | Leidy, N. K., Rennard, S. I., Schmier, J., Jones, M. K. C., & Goldman, M. (2003). The breathlessness, cough, and sputum scale: the development of empirically based guidelines for interpretation. Chest, 124(6), 2182-2191. https://doi.org/10.1378/chest.124.6.2182; Leidy, N. K., Schmier, J. K., Jones, M. K. C., Lloyd, J., & Rocchiccioli, K. (2003). Evaluating symptoms in chronic obstructive pulmonary disease: validation of the breathlessness, cough and sputum scale©. Respiratory medicine, 97, S59-S70. https://doi.org/10.1016/S0954-6111(03)80016-1 | Yes | Yes, fees may apply | https://www.astrazeneca.com/patient-reported-outcomes/respiratory.html | Fu, S. N., Yu, W. C., Wong, C. K. H., & Lam, M. C. H. (2016). Prevalence of undiagnosed airflow obstruction among people with a history of smoking in a primary care setting. International journal of chronic obstructive pulmonary disease, 11, 2391. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5045907/ | None identified in June 2019 | The BCSS has been translated into many different languages (26 translations). |
| Respiratory | Chronic obstructive pulmonary disease (COPD) | Exacerbation Of Chronic Pulmonary Disease Tool | EXACT, EXACT-PRO | USA | 2011 | A 14 item patient-reported outcome instrument for evaluating frequency, severity, and duration of exacerbations of chronic obstructive pulmonary disease (COPD). The E-RS (Evaluating Respiratory Symptoms) is a derivative instrument of the EXACT used to assess the severity of respiratory symptoms and the effect of treatment in patients with stable COPD. | Unidimensional | Self-report | Test-retest reliability, convergent and discriminant validity, and sensitivity to change have been demonstrated. | Leidy, N. K., Wilcox, T. K., Jones, P. W., Murray, L., Winnette, R., Howard, K., ... & EXACT-PRO Study Group. (2010). Development of the EXAcerbations of Chronic Obstructive Pulmonary Disease Tool (EXACT): a patient-reported outcome (PRO) measure. Value in health, 13(8), 965-975. https://doi.org/10.1111/j.1524-4733.2010.00772.x. Leidy, N. K., Wilcox, T. K., Jones, P. W., Roberts, L., Powers, J. H., & Sethi, S. (2011). Standardizing measurement of chronic obstructive pulmonary disease exacerbations: reliability and validity of a patient-reported diary. American journal of respiratory and critical care medicine, 183(3), 323-329. https://doi.org/10.1164/rccm.201005-0762OC | Yes | Yes, fees may apply | Copyright: © 2015 Evidera, https://www.exactproinitiative.com/ | Murray, L., & Leidy, N. K. (2018). Using Qualified PRO Measures in Drug Development An Update on the EXACT and E-RS. Patient Access, 10, 43. | None identified in June 2019 | EXACT has been translated into many different languages. For a list of translations see: https://www.exactproinitiative.com/translations/ |
| Respiratory | Chronic obstructive pulmonary disease (COPD) | Living With Chronic Obstructive Pulmonary Disease | LCOPD | UK, USA | 2011 | A 22 item scale examining the everyday impact of living with COPD. | Unidimensional | Self-report | Item reduction and testing for reproducibility and construct validity was conducted via Rasch and traditional psychometric analyses. Internal consistency, test-retest reliability and convergent validity was also demonstrated. | McKenna, S. P., Meads, D. M., Doward, L. C., Twiss, J., Pokrzywinski, R., Revicki, D., ... & Glendenning, G. A. (2011). Development and validation of the living with chronic obstructive pulmonary disease questionnaire. Quality of Life Research, 20(7), 1043-1052. https://link.springer.com/article/10.1007/s11136-011-9850-6 | Yes | Yes, fees may apply | http://www.galen-research.com/measures-database/ | Martinez, C. H., Raparla, S., Plauschinat, C. A., Giardino, N. D., Rogers, B., Beresford, J., ... & Han, M. K. (2012). Gender differences in symptoms and care delivery for chronic obstructive pulmonary disease. Journal of Women's Health, 21(12), 1267-1274. https://doi.org/10.1089/jwh.2012.3650 | None identified in June 2019 | The LCOPD has been translated into 15 different languages. |
| Respiratory | Chronic obstructive pulmonary disease (COPD) | Morning Activity And Symptoms Questionnaire | MASQ | UK | 2010 | The Morning Activity and Symptoms Questionnaire (MASQ) is a patient-reported outcome instrument developed to measure morning activities and morning symptoms. | Unidimensional | Self-report | Internal consistency, test-retest reliability, construct validity, and responsiveness to change have been demonstrated. | Partridge, M. R., Miravitlles, M., Ståhl, E., Karlsson, N., Svensson, K., & Welte, T. (2010). Development and validation of the Capacity of Daily Living during the Morning questionnaire and the Global Chest Symptoms Questionnaire in COPD. European Respiratory Journal, 36(1), 96-104. doi: 10.1183/09031936.00123709 | Yes | Yes, fees may apply | https://www.astrazeneca.com/patient-reported-outcomes/respiratory.html | Kim, Y. J., Lee, B. K., Jung, C. Y., Jeon, Y. J., Hyun, D. S., Kim, K. C., ... & Lee, K. H. (2012). Patient's perception of symptoms related to morning activity in chronic obstructive pulmonary disease: the SYMBOL study. The Korean journal of internal medicine, 27(4), 426. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3529242/ | None identified in June 2019 | The SGRQ has been translated into a number of languages (23 translations). |
| Respiratory | Chronic obstructive pulmonary disease (COPD), asthma | St Georges Respiratory Questionnaire | SGRQ | UK | 1992 | The SGRQ is a 50 item questionnaire developed to measure health status (quality of life) in patients with diseases of airways obstruction. The SGRQ-C is a 40 item version of the original 50 item SGRQ. It was derived from the original version after a detailed analysis of data from large studies in COPD. | 3: Symptoms, activity, and impact | Self-report | Internal consistency, test-retest reliability, and convergent and discriminant validity have been demonstrated. Rasch analysis was used to improve the COPD (SGRQ-C), with the weaker items being removed. | Jones, P. W., Quirk, F. H., Baveystock, C. M., & Littlejohns, P. (1992). A self-complete measure of health status for chronic airflow limitation. Am Rev Respir Dis, 145(6), 1321-1327. https://doi.org/10.1164/ajrccm/145.6.1321 Meguro, M., Barley, E. A., Spencer, S., & Jones, P. W. (2007). Development and validation of an improved, COPD-specific version of the St. George Respiratory Questionnaire. Chest, 132(2), 456-463. https://doi.org/10.1378/chest.06-0702 | Yes | Yes, fees may apply | http://www.healthstatus.sgul.ac.uk/sgrq/sgrq-downloads | Joppa, P., Tkacova, R., Franssen, F. M., Hanson, C., Rennard, S. I., Silverman, E. K., ... & Kenn, K. (2016). Sarcopenic obesity, functional outcomes, and systemic inflammation in patients with chronic obstructive pulmonary disease. Journal of the American Medical Directors Association, 17(8), 712-718. https://doi.org/10.1016/j.jamda.2016.03.020 | None identified in June 2019 | The SGRQ has been translated into many languages (147 translations). |
| Respiratory | Pulmonary arterial hypertension | Pulmonary Arterial Hypertension Symptoms And Impact | PAH-Sympact | USA | 2018 | This measure assesses pulmonary arterial hypertension symptoms and their impact. PAH-SYMPACT is a daily diary for symptoms. | 2: Symptoms, impacts | Self-report | Factor analysis, construct validity, and known group validity have been demonstrated. | McCollister, D., Shaffer, S., Badesch, D. B., Filusch, A., Hunsche, E., Schüler, R., ... & Peacock, A. (2016). Development of the Pulmonary Arterial Hypertension-Symptoms and Impact (PAH-SYMPACT®) questionnaire: a new patient-reported outcome instrument for PAH. Respiratory research, 17(1), 72. https://doi.org/10.1186/s12931-016-0388-6 ; Chin, K. M., Gomberg-Maitland, M., Channick, R. N., Cuttica, M. J., Fischer, A., Frantz, R. P., ... & Miller, C. E. (2018). psychometric validation of the pulmonary arterial hypertension-symptoms and impact (PAH-SYMPACT) questionnaire: results of the SYMPHONY trial. Chest, 154(4), 848-861. https://doi.org/10.1016/j.chest.2018.04.027 | Yes | Unknown | Contact: Kelly M. Chin, kelly.chin@utsouthwestern.edu | None identified in June 2019 | None identified in June 2019 | |
| Respiratory - Mental health | Anxiety among patients with chronic obstructive pulmonary disease (COPD) | Anxiety Inventory For Respiratory Disease | AIR | UK | 2013 | A 10 item measure to screen and measure anxiety in patients with chronic obstructive pulmonary disease (COPD). | 2: General anxiety, panic | Self-report | Internal consistency, test-retest reliability, convergent and discriminant validity have been demonstrated. Confirmatory factor analysis supported the two factor model. | Willgoss, T. G., Goldbart, J., Fatoye, F., & Yohannes, A. M. (2013). The development and validation of the anxiety inventory for respiratory disease. Chest, 144(5), 1587-1596. https://doi.org/10.1378/chest.13-0168 | Yes | Unknown | Copyright. AIR © Thomas Willgoss and Manchester Metropolitan University, 2013. All rights reserved. Specific contact details unkown | Willgoss, T. G., Yohannes, A. M., Goldbart, J., & Fatoye, F. (2012). “Everything was spiraling out of control”: experiences of anxiety in people with chronic obstructive pulmonary disease. Heart & Lung: The journal of acute and critical care, 41(6), 562-571. https://doi.org/10.1016/j.hrtlng.2012.07.003 | None identified in June 2019 | |
| Skin | Atopic dermatitis | Quality Of Life Index For Atopic Dermatitis | QoLIAD | UK, Italy and the Netherlands | 2004 | A 25 item measure of the quality of life of adult patients with atopic dermatitis. | Unidimensional | Self-report | Construct validity and factor analysis have been demonstrated. | Whalley, D., McKenna, S. P., Dewar, A. L., Erdman, R. A., Kohlmann, T., Niero, M., ... & Van Assche, D. (2004). A new instrument for assessing quality of life in atopic dermatitis: international development of the Quality of Life Index for Atopic Dermatitis (QoLIAD). British Journal of Dermatology, 150(2), 274-283. https://doi.org/10.1111/j.1365-2133.2004.05783.x | Unknown | Unknown | Contact: S. Mcjenna, smckenna@galen‐research.com | None identified in June 2019 | None identified in June 2019 | Translations available for Netherlands, Italy, Germany, France, USA and Spain. |
| Skin | Dermatitis | Peak Pruritus Numerical Rating Scale | Peak Pruritus NRS | USA | 2019 | A measure of worst itch intensity in adults with moderate-to-severe atopic dermatitis. The Peak Pruritus Numerical Rating Scale (NRS) was developed and validated as a single item, patient-reported outcome (PRO) of itch severity. | Unidimensional: Itch severity | Self-report | Construct validity and known groups validity have been demonstrated. | Yosipovitch, G., Reaney, M., Mastey, V., Eckert, L., Abbé, A., Nelson, L., ... & Akinlade, B. (2019). Peak Pruritus Numerical Rating Scale: psychometric validation and responder definition for assessing itch in moderate‐to‐severe atopic dermatitis. British Journal of Dermatology. doi: 10.1111/bjd.17744 https://onlinelibrary.wiley.com/doi/pdf/10.1111/bjd.17744 |
Unknown | Unknown | Contact: Gil Yosipovitch, yosipog@gmail.com | None identified in June 2019 | None identified in June 2019 | |
| Skin | Dermatology | Dermatology Life Quality Index | DLQI | UK | 1994 | A measure of Quality of Life of dermatology patients to be used as an outcome measure in health services research. Also available: Versions for children (CDLQI) and for family (FDLQI). | Unidimensional | Self-report | Construct validity has been demonstrated. | Shim, T. N., & Abdullah, A. (2013). The effect of pulsed dye laser on the dermatology life quality index in erythematotelangiectatic rosacea patients: an assessment. The Journal of clinical and aesthetic dermatology, 6(4), 30. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3638853/pdf/jcad_6_4_30.pdf | Yes | Yes, fees may apply | https://www.cardiff.ac.uk/medicine/resources/quality-of-life-questionna… | Dalgard, F. J., Gieler, U., Tomas-Aragones, L., Lien, L., Poot, F., Jemec, G. B., ... & Evers, A. W. (2015). The psychological burden of skin diseases: a cross-sectional multicenter study among dermatological out-patients in 13 European countries. Journal of Investigative Dermatology, 135(4), 984-991. https://doi.org/10.1038/jid.2014.530 | None identified in June 2019 | Available in many languages including Arabic, Chinese, French, German, Russian, Spanish, etc. |
| Skin | Dermatology | Dermatology Quality Of Life Scales | DQOLS | UK | 1997 | assesses the impact of skin diseases on patients’ psychosocial state and everyday activities. | 4 psychosocial subscales: embarrassment, despair, irritableness, distress; and, 4 activities subscales: everyday, summer, social, sexual | Self-report | Factor analysis and construct validity have been demonstrated. | Morgan, M., McCreedy, R., Simpson, J., & Hay, R. J. (1997). Dermatology quality of life scales–a measure of the impact of skin diseases. British journal of dermatology, 136(2), 202-206. https://doi.org/10.1046/j.1365-2133.1997.d01-1169.x | Unknown | Unknown | Contact: Morgan RJ Hay | None identified in June 2019 | None identified in June 2019 | |
| Skin | Dermatology | Dermatology-Specific Quality Of Life Instrument | DSQL | Canada | 1997 | A measure to quantify the effects of skin disease on physical discomfort and symptoms, psychologic well-being, social functioning, self-care activities, performance at work or school, and self-perceptions. Originally developed for contact dermatitis. | 3: Physical, emotional, social functioning | Self-report | Factor analysis was used for validation. | Anderson, R. T., & Rajagopalan, R. (1997). Development and validation of a quality of life instrument for cutaneous diseases. Journal of the American Academy of Dermatology, 37(1), 41-50. https://doi.org/10.1016/S0190-9622(97)70210-X | Unknown | Unknown | Contact: Roger T. Anderson | None identified in June 2019 | None identified in June 2019 | |
| Skin | Eczema | Patient-Oriented Eczema Measure | POEM | USA | 2004 | This measure monitors disease activity in children and adults with atopic eczema. Other versions available for proxy completion. | Unidimensional | Self-report | Construct validity and criterion validity have been demonstrated. | Charman, C. R., Venn, A. J., & Williams, H. C. (2004). The patient-oriented eczema measure: development and initial validation of a new tool for measuring atopic eczema severity from the patients’ perspective. Archives of dermatology, 140(12), 1513-1519. doi: 10.1001/archderm.140.12.1513 | Yes | No | https://www.nottingham.ac.uk/research/groups/cebd/resources/poem.aspx | Francis, N. A., Ridd, M. J., Thomas-Jones, E., Shepherd, V., Butler, C. C., Hood, K., ... & Wootton, M. (2016). A randomised placebo-controlled trial of oral and topical antibiotics for children with clinically infected eczema in the community: the ChildRen with Eczema, Antibiotic Management (CREAM) study. https://www.ncbi.nlm.nih.gov/books/NBK348956/ | None identified in June 2019 | |
| Skin | Pressure injury | Pressure Ulcer Quality Of Life | PU-QOL | UK | 2015 | Measures health-related quality of life outcomes for patients with pressure ulcers (include the relative ulcer burden experienced). | 10: Pain, exudate, odour, sleep, vitality, mobility/movement, daily activities, emotional well-being, self-consciousness and appearance, and participation | Self-report | Rasch analysis, known group and convergent validity, and internal consistency reliability have been demonstrated. | Nixon, J., Nelson, E. A., Rutherford, C., Coleman, S., Muir, D., Keen, J., ... & Collinson, M. (2015). Pressure UlceR Programme Of reSEarch (PURPOSE): using mixed methods (systematic reviews, prospective cohort, case study, consensus and psychometrics) to identify patient and organisational risk, develop a risk assessment tool and patient-reported outcome Quality of Life and Health Utility measures. Programme Grants for Applied Research, 3(6). doi: 10.3310/pgfar03060 | Unknown | Unknown | Contact: Jane Nixon, j.e.nixon@leeds.ac.uk | None identified in June 2019 | None identified in June 2019 | |
| Skin | Skin conditions | Skindex | Skindex, Skindex-29, Skindex-16 | USA | 1997 | A measure of the effects of skin disease on patients' quality of life. An adolescent version also exists: Skindex-Teen. Skindex-29 is a revised 29 items version of Skindex. Skindex-16 is a single-page version of Skindex. (The original 61 item version is no longer used). | 3: Symptoms, emotions, functioning | Self-report | Exploratory factor analysis and construct validity have been demonstrated. | Chren, M. M., Lasek, R. J., Flocke, S. A., & Zyzanski, S. J. (1997). Improved discriminative and evaluative capability of a refined version of Skindex, a quality-of-life instrument for patients with skin diseases. Archives of dermatology, 133(11), 1433-1440. doi:10.1001/archderm.1997.03890470111018 | Yes | Yes, fees may apply | Mapi Research Trust - PROVIDE https://eprovide.mapi-trust.org/instruments/skindex#basic_description | Janowski, K., Steuden, S., Pietrzak, A., Krasowska, D., Kaczmarek, Ł., Gradus, I., & Chodorowska, G. (2012). Social support and adaptation to the disease in men and women with psoriasis. Archives of dermatological research, 304(6), 421-432. https://link.springer.com/article/10.1007/s00403-012-1235-3 | None identified in June 2019 | Available in many languages https://eprovide.mapi-trust.org/instruments/skindex#basic_description |