Patient- reported outcome measures (PROMs) and patient-reported experience measures (PREMs) are increasingly recognized as valuable and essential information for achieving health system goals. As illustrated in CIHI's Health System Performance Measurement Framework, information from the patient's perspective is essential to supporting a patient-centred approach to care. It is also essential to understanding whether health care services and procedures make a difference to patients' health status and quality of life.
PROMs measure aspects of a patient’s health status at a particular point in time, either during an illness or while treating a health condition. In some cases, using pre- and post-event PROMs, the impact of an intervention can be measured. PROMs can complement existing information on the quality of care and services provided. An example is information from PREMs, which provide the patient’s view on the delivery of services (e.g., communication with staff, cleanliness, timeliness).
Both PROMs and PREMs are measured from patients’ perspectives, and they can be used together to more fully assess quality of care. PROMs can also complement traditional sources of data such as information derived from clinical administrative data. Together, these provide an enriched source of patient information to better inform policies and programs to support patient-centred and value-based health care delivery.
What are PROMs?
PROMs are measurement instruments that patients complete to provide information on aspects of their health status that are relevant to their quality of life, including symptoms, functionality and physical, mental and social health.
Many PROMs instruments are available. PROMs tools are categorized as generic (applied across different populations) or condition-specific (used to assess outcomes that are characteristic of or unique to particular diseases or sectors of care). Typically, generic and condition-specific instruments are administered concurrently, as they provide complementary information.
Why collect PROMs?
Patient-reported outcomes are fundamental to understanding whether health care services and procedures make a difference to patients' health status and quality of life. PROMs provide insight on the effectiveness of care from the patient's perspective.
Who uses PROMs?
PROMs can be used by
- Patients and clinicians to inform clinical care, improve patient-provider communication and patient-involvement in decision-making
- Health system decision makers to inform health services programming, planning and policies, as well as for performance measurement and quality improvement initiatives
- Researchers and policy-makers for comparative and cost-effectiveness analysis, as well as other research questions
The PROMs Background Document provides additional information on PROMs.
A common approach to collecting and reporting PROMs data provides more comparable data – regionally, nationally and internationally – with which to drive health system enhancements. In response to stakeholder interest, CIHI has been working with a broad range of stakeholders to provide leadership to advance standardized approaches to PROMs in Canada. In 2015, CIHI hosted the pan-Canada PROMs Forum, which launched CIHI’s PROMs Program to support the development of PROMs data collection standards and reporting in priority topics. The initial focus is on hip and knee replacement surgeries.
With preliminary consultations in the areas of generic tools and renal care, CIHI continues to work with stakeholders to advance a common approach to collecting and reporting on PROMs across Canada and explore other priority areas for PROMs standards activities.
The PROMs Information Sheet provides additional information on CIHI’s PROMs program.
Hip and knee arthroplasty were identified as initial areas of focus for PROMs because
- PROMs programs currently exist in these areas across Canada and internationally
- There is strong support from the clinical community
- Evidence supports expected improvements in pain, function and quality of life
- A high number of patients undergo these surgeries, resulting in substantial costs to health systems
CIHI has published the Patient-Reported Outcome Measures Data Collection Manual: Hip and Knee Arthroplasty, 2019 (updated in 2019). This manual outlines national data collection guidelines and recommendations for
- PROMs instruments (EQ-5D-5L, the 5-level version of EQ-5D, a standardized instrument developed by the EuroQol Group that measures health-related quality of life; the Oxford Hip Score and the Oxford Knee Score )
- Survey collection time points (pre-surgery and one year post-surgery)
- Minimum data set (additional information to collect with PROMs survey)
CIHI plans to support stakeholders, where feasible, with adopting the national PROMs standards to enable pan-Canadian PROMs comparative reporting. CIHI has obtained licences to use the OHS/OKS and EQ-5D-5L and is permitted to sub-licence these instruments to Canadian hospitals and providers for use in routine care (i.e., non-commercial purposes).
Ontario is the first jurisdiction to adopt the national PROMs standards. At the request of the Ontario Ministry of Health and Long-Term Care, CIHI is collaborating with Cancer Care Ontario to pilot the collection of PROMs in Ontario in support of the hip and knee replacement Quality-Based Procedure (QBP) program. CIHI’s Canadian Joint Replacement Registry Advisory Committee and PROMs Hip and Knee Replacements Working Group have endorsed these standards. CIHI is working with stakeholders to expand alignment to national standards to other jurisdictions beyond Ontario.
CIHI and the Organisation for Economic Co-operation and Development (OECD) are co-leading an international Hip and Knee Working Group, launched in December 2017, as part of the OECD Patient-Reported Indicators Survey (PaRIS) initiative External link, opens in new window. This international working group aims to provide comparable hip and knee arthroplasty PROMs reporting in OECD Health at a Glance 2019, and also recommends international standards for new PROMs collection.
Please download the registration form. Using Adobe Acrobat, fill in the required information and save the completed form, then email it to email@example.com.
EQ-5D registration form (PDF)
- PROMs Information Sheet (PDF)
- PROMs Background Document (PDF)
- PROMs Forum Proceedings (PDF)
- Patient-Reported Outcome Measures Data Collection Manual: Hip and Knee Arthroplasty, 2019 (PDF)
- CIHI PROMs Program: Registration Form, EQ-5D-5L Licence (PDF)
- CIHI PROMs Program: Registration Form, Oxford Hip Score/Oxford Knee Score Licence (PDF)
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