Evidence on PROMs

Research on patient-reported outcome measures (PROMs) has evolved over three decades.^1,2 During this time, hundreds of PROMs have been developed.² The development of PROMs originally came from researchers looking to incorporate the perspectives of patients in their work.³ 

PROMs often provide resource-efficient and standardised ways of collecting information on complex outcomes, such as daily functioning.⁴ More recently, there has been increased interest in PROMs among clinicians, healthcare providers, and health system-level policy developers.

This page provides a summary of the evidence on the use of PROMs up to 2019. Further information can be found in the literature review ⁵ and environmental scan ⁶. This information is supplemented by experts sharing their experiences of practical implementation in other countries⁷. 

PROMs in clinical practice (micro level)

'So far, what we know from the scientific evidence about PROMs is that having a standardised way of assessing PROMs at the beginning of the consultation can actually improve communication between the patient and the doctor. So that’s where the biggest promise lies.'

Australian PROMs Expert ⁷

PROMs can contribute to the provision of person-centred care.^2,8 Using PROMs has the potential to improve clinician-patient communication. In the context of clinical consultations, PROMs are being used to:

• Help patients to raise concerns with their clinicians (for example, changes in mental health while receiving treatment)
• Sensitise patients to health issues (for example, symptoms) related to their underlying health conditions and associated treatments that they may not have thought to discuss with their clinicians
• Assist in the identification of health issues that may require further investigation and management
• Facilitate the tracking of health outcomes over time
• Enable comparisons to be made between an individual patient’s outcomes with those of other patients with the same health conditions
• Promote shared decision-making when information is available on the effects of alternative treatments on patient-reported outcomes.^7,9,10

The impact of PROMs on clinical consultations is an emerging field of research. Initial evidence has confirmed that using PROMs in daily practice can improve communication between patients and clinicians.^11,12 When summaries of PROMs responses are made available to clinicians, patients tend to report that health-related quality of life issues are discussed more frequently during consultations.

PROMs in quality improvement and research (meso level)

'I know of a team of orthopaedic surgeons who began collecting these data for a couple of years and they realised that they could reduce the number of post-surgery rehabilitation visits. They had been, essentially, prescribing everybody 12 weeks of rehab. And when they started measuring the PROMs, they realised that some patients were done in five or six weeks and some patients needed 10 or 12 weeks. And they could tune the quantity of rehab to the patient’s pace of recovery. And they actually now had a metric of when people were functioning at a level that would be considered optimal, post-operatively. So, they were able to overall, reduce the total number of visits for rehabilitation and still achieve the same or better results.'

International PROMs Expert ⁷

PROMs have been used extensively in research and are increasingly being used in clinical registries and quality improvement activities. PROMs responses from many patients can be analysed together to generate information on:

• The comparative effectiveness of treatments
• The effectiveness of quality improvement activities
• Variations in care, costs, and outcomes among healthcare providers.^7,9

This knowledge can be used to:

• Inform shared decision-making between clinicians and patients about treatment options
• Identify examples of best practice that can be promoted to facilitate learning and continuous improvement
• Inform future quality improvement activities
• Compare healthcare providers.^7,9,13,14

PROMs in clinical research

PROMs are routinely used in trials of clinical interventions, such as medications and medical devices.^1,2 Information derived from PROMs can be useful in assessing the benefits and harms of preventing, diagnosing, treating, and monitoring clinical conditions.¹⁵ There is also the potential to use this information to support shared decision-making.⁷ Patients may find this information helpful when deciding whether or not to have treatment or in choosing between treatment options.

PROMs in quality improvement activities

PROMs can be used to compare and benchmark processes and outcomes against selected criteria, such as industry standards or the performance of other healthcare providers.⁷ Such comparisons can be used to highlight best practice and to identify areas of potential improvement.

Few studies have been undertaken on the outcomes of using PROMs for comparison and benchmarking, and the findings from the available research are equivocal. In the first trial of the effects of providing surgeons with feedback comparing their PROMs results with those of their peers, for example, no changes in patient outcomes were observed.¹⁷ In contrast, there is anecdotal evidence of surgeons deciding to stop performing certain procedures when their PROMs scores were not meeting expectations.¹⁸

PROMs in population surveillance and health policy (macro level)

'So the Therapeutic Goods Administration (TGA) are very interested in this type of data, because they get reports to them that suggests there may be a problem with a device, and then they’ll ask us about our experience of that device, but as PROMs come on board that will form part of the assessment for the TGA.'

Austalian PROMs Expert ⁷

There has been increased interest in using PROMs in the wider healthcare system. PROMs responses may be used by:

• Patients to inform their choices of healthcare providers (when PROMs information is publicly reported)
• Healthcare providers to drive improvements in quality, safety, and efficiency
• Regulatory bodies and manufacturers to understand the risks and benefits of medical devices (such as implants), surgical techniques, and pharmaceuticals
• Decision-makers in establishing and evaluating policies designed to benefit whole populations, including conducting population surveillance of trends in outcomes, identifying factors associated with “value” that can inform payment models and informing system-wide quality improvement activities (for example, standard setting, adherence to clinical guidelines, and performance measurement across healthcare organisations).¹⁴

An evidence base on the impact of PROMs at a macro level is still to be developed.

References 

1. Basch E. New frontiers in patient-reported outcomes: adverse event reporting, comparative effectiveness, and quality assessment. Annu Rev Med 2014; 65: 307-17.
2. Nelson EC, Eftimovska E, Lind C, Hager A, Wasson JH, Lindblad S, et al. Patient reported outcome measures in practice. BMJ 2015; 350: g7818.
3. Tarlov AR, Ware JE, Greenfield S, Nelson EC, Perrin E, Zubkoff M. The Medical Outcomes Study: An application of methods for monitoring the results of medical care. JAMA 1989; 262: 925-30.
4. Health and Public Policy Committee, American College of Physicians. Comprehensive functional assessment for elderly patients. Ann Intern Med 1988; 109: 70-2.
5. Williams K, Sansoni J, Morris D, Grootemaat P, Thompson C. Patient-reported outcome measures: Literature review. Sydney: ACSQHC; 2016.
6. Thompson C, Sansoni J, Morris D, Capell J, Williams K. Patient-reported outcome measures: An environmental scan of the Australian healthcare sector. Sydney: ACSQHC; 2016.
7. Williams K, Thompson C. Patient-reported outcome measures: Stakeholder interviews. Sydney: ACSQHC; 2018.
8. Lavallee DC, Chenok KE, Love RM, Petersen C, Holve E5, Segal CD, et al  Incorporating patient-reported outcomes into health care to engage patients and enhance care. Health Aff 2016; 35: 575-82.
9. Valderas JM, Kotzeva A, Espallargues M, Guyatt G, Ferrans CE, Halyard MY, et al. The impact of measuring patient-reported outcomes in clinical practice: a systematic review of the literature. Qual Life Res 2008; 17: 179-93.
10. Donaldson MS. Taking PROs and patient-centered care seriously: incremental and disruptive ideas for incorporating PROs in oncology practice. Qual Life Res 2008; 17: 1323-30.
11. Ishaque S, Karnon J, Chen G, Nair R, Salter AB. A systematic review of randomised controlled trials evaluating the use of patient-reported outcome measures (PROMs). Qual Life Res 2019; 28: 567-592.
12. Kotronoulas G, Kearney N, Maguire R, Harrow A, Di Domenico D, Croy S, et al. What is the value of the routine use of patient-reported outcome measures toward improvement of patient outcomes, processes of care, and health service outcomes in cancer care? A systematic review of controlled trials. J Clin Oncol 2014; 32: 1480-501.
13. Devlin NJ, Appleby J. Getting the most out of PROMs: Putting health outcomes at the heart of NHS decision-making. London, England: The King’s Fund; 2010.
14. Lipscomb J1, Donaldson MS, Hiatt RA. Cancer outcomes research and the arenas of application. J Natl Cancer Inst Monogr. 2004; 33: 1-7.
15. Ahmed S, Berzon R, Revicki D, Lenderking W, Moinpour C, Basch E, et al. The use of patient-reported outcomes (PRO) within comparative effectiveness research: implications for clinical practice and health care policy. Med Care 2012; 50: 1060-70.
16. Basser MR. Benefits case study – ‘Patient Reported Outcome Measures (PROMs)’ outputs: Improving health outcomes for patients undergoing knee replacement, hip replacement, varicose vein and groin hernia treatments. Leeds, England: Health & Social Care Information Centre; 2015.
17. Boyce MB, Browne JP. The effectiveness of providing peer benchmarked feedback to hip replacement surgeons based on patient-reported outcome measures – Results from the PROFILE (Patient-Reported Outcomes: Feedback Interpretation and Learning Experiment) trial: A cluster randomised controlled study. BMJ Open 2015; 5: e008325.
18. Coombes R. Ahead of the game. BMJ 2008; 336: 1465.