What are PROMs?
Patient-reported outcome measures (PROMs) are measurement instruments designed to assess health outcomes as directly reported by patients without interpretation of their responses by clinicians or anyone else.
PROMs could take on many forms, assessing general health or specific symptoms, functional ability, general well being, health-related quality of life, or global quality in life. Some measures are generic, and others are disease or condition specific.
Generic PROMs are designed to assess general aspects of health that are not specific to a particular disease (e.g., EQ-5D, SF-12/36, HUI2/3, WHOQOL, ESAS, QWB, and PROMIS), while disease-specific PROMs assess aspects of health that are specific to a given disease (e.g., WOMAC, AQLQ, EORTC-QLQ-C30, PHQ-9, PAID-5).
Generic and disease-specific PROMs each have their own advantages and disadvantages. For instance, generic PROMs are useful when comparing different groups of patients across different health conditions; however, they may be less sensitive to pick up important changes in specific aspects of health. On the other hand, disease-specific PROMs are not useful in comparing different groups of patients with different diseases; however, they are more likely to be sensitive to specific changes in health. Given these advantages and disadvantages, it is often recommended that a generic and a disease-specific PROM should be used together.
PROMs could be profile or preference-based:
Profile measures (e.g., SF-12/36, WHOQOL) are used to determine the position of some characteristic on specific domains, which are measured by multiple items. Preference-based measures (e.g., EQ-5D, HUI-1/2, SF-6D) are used to place a value on health states or conditions. Profile measures are useful in various applications that aim to assess health or an aspect of it from a patient perspective in the evaluation of treatments or services. While preference-based measures could be used for these purposes as well, they are also used to generate utility values to calculate quality-adjusted life years (QALYs) that are used in economic analysis of health interventions.
Visit our EQ-5D demo page to see an example of how to complete a generic, health-related quality of life, preference-based PROM.
Use of PROMs Data – a Multi-Level Approach
We recommend thinking of three levels for the use of PROMs data within the health system:
- Micro – Patient/clinician level: At this level, PROMs data can be used at the individual patient level. PROMs offer an opportunity for patients to provide input and perspective into their own care, and enhances communication with their healthcare providers. At the individual patient level, PROMs data can inform clinical practice, and enhance patient management. Data could be used to screen for certain health issues or symptoms, and assess and monitor patients’ health status over time. PROMs data could be used to support decision-making around patient care and management.
- Meso – Organization level: At this level, healthcare providers could aggregate PROMs data to identify certain outcomes or symptoms in a panel of patients or at a given clinic or treatment site, and identify gaps in care. PROMs data could also be used to assess and monitor health outcomes of a group of patients over time, to evaluate health programs within certain clinics or organizations, and to evaluate the impact of healthcare services.
- Macro – System level: At this level, PROMs data can be used to evaluate the performance of the healthcare system by incorporating a patient perspective, to compare outcomes across different jurisdictions or regions or over time. This high-level use of PROMs data could support health policy-makers in health care service allocation decisions that take into account patients’ perspective and priorities.
APERSU developed a White Paper to provide a brief overview of PROMs and their use in Alberta and guidance to enhance the use of these measures within the healthcare system in the province.
The EQ-5D can be used at different levels within the healthcare system for various purposes; some are outlined in this one-pager within primary care.
The EuroQol Group hosted a meeting in Brussels, Belguim, on September 17, 2019, to bring together PROMs users in routine outcome measurement within healthcare systems from around the world. The aim of the meeting was to share experiences and learnings, and discuss priorities for research and developments in the use of EQ-5D within health systems. The meeting proceedings include the meeting program, a summary of each presentation and discussion sessions, and a list of participants.
Webinars on PROMs Use
May 28, 2020. Title: The use of routinely collected PROMs data in Community Rehabilitation in Alberta
Webinar materials: Presentation Slides
March 26, 2020. Title: “How can we use routinely collected PROMs data to support decision-making within the healthcare system?“
Webinar materials: Presentation Slides