Patient-reported outcome measures (PROMs) are used to assess a patient’s health status at a particular point in time. PROMs tools can be completed either during an illness or while treating a health condition. In some cases, using pre- and post-event PROMs can help measure the impact of an intervention.
PROMs and patient-reported experience measures (PREMs) are increasingly recognized as providing valuable and essential information for achieving health system goals. Both PROMs and PREMs are measured from the patient’s perspective, and they can be used together to more fully assess quality of care. Information from the patient’s perspective is essential to supporting a patient-centred approach to care, as outlined in CIHI’s Health System Performance Measurement Framework.
PROMs can also complement traditional sources of data, such as information derived from clinical administrative data, to inform policies, programs and value-based health care delivery. They are essential to understanding whether health care services and procedures make a difference to patients’ health status and quality of life.
What are PROMs?
PROMs are measurement tools that patients use 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 tools are available. They are categorized as
- Generic (applied across different populations)
- Condition-specific (used to assess outcomes that are specific or unique to particular diseases or sectors of care)
Typically, generic and condition-specific tools are administered at the same time, as they provide complementary information.
Why collect PROMs?
Patient-reported outcomes are important 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?
Patients and clinicians — to inform clinical care, and to 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 — to conduct comparative and cost-effectiveness analyses, as well as to answer 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.
CIHI has held preliminary consultations in the areas of generic tools and renal care, and continues to work with stakeholders to advance a common approach to collecting and reporting on PROMs across Canada and to exploring other priority areas for PROMs standards.
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 after surgery
- 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. 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); and the Oxford Hip Score (OHS) and the Oxford Knee Score (OKS)
2 survey collection time points: pre-surgery and 1 year post-surgery
Minimum data set: additional information to collect with a PROMs tool
CIHI’s Canadian Joint Replacement Registry Advisory Committee and PROMs Hip and Knee Replacements Working Group have endorsed these standards. CIHI is facilitating the uptake of these 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., not for research or commercial purposes). To register for these PROMs tools, click the links below to download the registration forms. Using Adobe Acrobat, fill in the required information and save the completed form, then email it to email@example.com.
Ontario Hip and Knee PROMs Project
Ontario is the first jurisdiction to adopt the national PROMs standards. On behalf of the Ontario Ministry of Health, CIHI is collaborating with Cancer Care Ontario (CCO) to pilot the collection of PROMs in Ontario in support of the hip and knee replacement Quality-Based Procedure (QBP) Program.
To align with key patient interactions outlined in the hip and knee QBP, Ontario has also added an additional survey collection time point at 3 months following surgery. Some Ontario hospital sites may also collect PROMs at a rapid access clinic (a centralized intake and assessment model in some regions).
OECD Patient-Reported Indicators Survey (PaRIS) initiative
CIHI and the Organisation for Economic Co-operation and Development (OECD) have partnered to lead a pilot project to report health status and function for hip and knee arthroplasty patients using internationally comparable PROMs. This activity arises from the OECD’s Patient-Reported Outcomes Indicators Survey (PaRIS) initiative, which identified the need for PROMs reporting to better monitor health system performance and to drive continuous improvement.
CIHI and the OECD co-chair the international Working Group on Patient-Reported Indicators for Hip and Knee Replacement Surgery to build consensus on common approaches for PROMs collection and reporting. Members include patient representatives, clinicians, national arthroplasty registries, the International Society of Arthroplasty Registries (ISAR), experts in PROMs measurement and government representatives from several OECD member countries. The working group’s priorities include developing indicators for comparable reporting in the OECD’s Health at a Glance 2019 and developing new international data collection standards.
Inaugural results from 10 hip and knee PROMs from 8 countries, including Canada, are featured in the OECD’s Health at a Glance 2019:
- PROMs International Data Collection Guidelines (PDF)
- PROMs Information Sheet (PDF)
- PROMs Background Document (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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