What are PROMs? Patient-reported outcome measures (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 essential 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 and complement existing information on the quality of care and services provided, such as clinical, administrative and patient-reported experience measures (PREMs) data, to enrich existing information and better inform decisions.
Who uses PROMs? PROMs can be used to inform clinical practices; health services programming, planning and policies; performance measurement; comparative effectiveness analysis; and quality improvement initiatives.
The PROMs Background Document (PDF) provides additional information on PROMs.
PROMs are increasingly recognized as valuable and essential information for achieving health system goals. As illustrated in CIHI's Health System Performance Measurement Framework (PDF), information from the patient's perspective is essential to support a patient-centred approach to care and is 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 during an illness or with a health condition. In some cases, using pre- and post-event PROMs, the impact of an intervention can be measured. A complementary source of information is 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.
In 2015, CIHI hosted a pan-Canadian PROMs Forum , attended by Canadian health leaders, to discuss and further the development of PROMs information across Canada. Discussions at the 2015 CIHI PROMs Forum (PDF) confirmed interest in advancing a common approach to PROMs across Canada, as well as a desire for CIHI to provide leadership and guide the development of a pan-Canadian approach to PROMs.
A common approach to collecting and reporting PROMs data is more cost-effective and timely, and provides much more comparable data (regionally, nationally and internationally) with which to drive health system enhancements.
In response to stakeholder interest, CIHI is providing leadership for advancing standardized approaches to PROMs across Canada. With this goal in mind, CIHI launched its PROMs Program to support the development of PROMs data collection standards and reporting in priority topics: hip and knee replacements, renal care and generic tools.
CIHI continues to work with a broad range of stakeholders to advance a common approach to collecting and reporting on PROMs across Canada and explore other priority areas for PROMs standards activities (e.g., cancer, mental health and addictions, home and continuing care).
The PROMs Information Sheet (PDF) 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 PROMs Data Collection Manual: Hip and Knee Arthroplasty (PDF), which outlines national data collection guidelines and recommendations for
- PROMs instruments (EQ-5D-5L, Oxford Hip Score/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’s Canadian Joint Replacement Registry (CJRR) Advisory Committee and PROMs Hip and Knee Replacements Working Group have endorsed these standards.
CIHI plans to support stakeholders, where feasible, in their adoption of the national PROMs standards in order to enable pan-Canadian PROMs comparative reporting. Ontario is the first jurisdiction to adopt these national standards. At the request of the Ontario Ministry of Health and Long-Term Care, CIHI is collaborating with Cancer Care Ontario to pilot PROMs collection in Ontario, with the intent to implement province-wide collection by March 2020.
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. 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.
To facilitate the adoption and use of the recommended instruments, 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).
To request a licence for the OHS/OKS and EQ-5D-5L, a registration form must be completed. Email firstname.lastname@example.org for more information.
CIHI has established the PROMs Renal Working Group to help guide the development of national PROMs standards in renal care and to promote the uptake of these standards and data collection to support the delivery of patient-centred care. CIHI and the PROMs Renal Working Group have completed an exploratory analysis of provincial PROMs data. The objectives of this analysis were to determine the feasibility of capturing routine PROMs electronically and whether the administered tool can be used as a patient-reported outcome measure to support patient care and quality improvement initiatives at the clinical and health system levels.
- PROMs Information Sheet (PDF)
- PROMs Background Document (PDF)
- PROMs Forum Proceedings (PDF)
- PROMs Data Collection Manual: Hip and Knee Arthroplasty (PDF)
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