About PROMs

A patient-reported outcome is 'any report of the status of a patient’s health condition that comes directly from the patient, without interpretation of the patient’s response by a clinician or anyone else'.¹

Healthcare is enhanced through understanding health outcomes from a patient's perspective. Insights into patient experiences can complement information from clinical measures. The use of patient-reported outcome measures (PROMs) provides a structured way of helping patients to report information about health outcomes.

What are PROMs?

PROMs are questionnaires that help patients to report on outcomes relating to their health. These questionnaires focus on various aspects of health, such as symptoms, daily functioning, and quality of life. PROMs are usually measured on two or more occasions to enable comparisons to be made over time.

PROMs typically have questions that patients respond to using rating scales. For example, the Medical Outcomes Study short-form health status survey (known as the SF-36)² is a PROM that measures health-related quality of life. The survey has 36 questions that require responses on a mixture of two-, three-, five-, and six-point scales. When the responses to all the questions are scored, the output provides information about someone’s physical functioning and role limitations.

What are the different types of PROMs?

There are three general types of PROMs:

• Generic PROMs measure aspects of health that are common to most patients. For example, the SF-36 is suitable for use across most patient populations.
• Condition-specific PROMs have questions that directly relate to specific health conditions and their associated treatments. For example, some PROMs enable patients to report the severity of the symptoms.
• Population-specific PROMs apply to specific service sectors or segments of the population. For example, some PROMs have been designed to be used with children.

Why are PROMs used?

PROMs are used for three broad purposes:

• For enhancing clinician-patient interactions (micro level)
• For comparing the effects of different treatments and for understanding variation among healthcare providers (meso level)
• For population surveillance and informing policy (macro level).

These purposes are not mutually exclusive. The use of PROMs for any of these purposes can contribute to improving healthcare quality and safety.

What is the Commission’s role in the use of PROMs?

Australia

The Commission is undertaking a program of work to support the use of PROMs to drive quality improvement in a way that brings patients’ voices and outcomes to the fore. The Commission has published a series of reports investigating the use of PROMs in Australia and internationally. Further work will focus on supporting the uptake of PROMs in Australia and support the exchange of information between the early adopters of PROMs.

International

The Organisation for Economic Co-operation and Development

The Commission is actively involved in the work of the Organisation for Economic Co-operation and Development (OECD). Through its Patient-Reported Indicators Survey (PaRIS) initiative, the OECD is developing instruments, definitions and data collection strategies to enable international benchmarks for patient-reported indicators of health system performance. This initiative involves:

• Supporting the standardisation and adoption of international monitoring in patient populations for whom patient-reported indicators already exist (the current focus is on indicators for hip and knee replacements, breast cancer care, and mental health care)
• Developing new patient-reported indicators for use with patient populations for whom few indicators exist (the current focus is on indicators for patients with one or more chronic conditions, who are living in the community, and who are principally treated in primary care or other ambulatory care settings).

International Consortium for Health Outcomes Measurement

PROMs are also being used to realise the potential of value-based healthcare. The International Consortium for Health Outcomes Measurement (ICHOM) is defining Standard Sets of PROMs and supporting their implementation and use for international comparison. Each Standard Set contains a standardised list of health outcomes that matter most to patients, measures of those outcomes, and time points for measurement. These sets are developed in conjunction with patient representatives, leading physicians and registry leaders. The Commission supports the work of ICHOM by providing expert advice on the development of these Standard Sets.

Over 25 ICHOM Standard Sets have been developed. They cover a large range of health conditions (for example, diabetes, inflammatory arthritis, and paediatric facial palsy) and specific patient populations (for example, older adults).

References

1. Food and Drug Administration. Guidance for industry – patient-reported outcome measures: Use in medical product development to support labeling claims. Rockville, MD: US Department of Health and Human Services; 2009.
2. Ware JE Jr, Sherbourne CD. The MOS 36-item short form health status survey (SF-36). I. Conceptual framework and item selection. Med Care 1992; 30: 473-83.