Our Research
APERSU Research Agenda
We conduct:
Applied research to examine the effectiveness and cost-effectiveness of PROMs in various settings; exploring methods of reporting and presenting PROMs data; investigating approaches of using PROMs data at the system level for various purposes; and studying the role of PROMs in patient-clinician shared decision making and patient centred care.
Methodological research to evaluate the measurement properties and performance of PROMs in various populations; and conducting systematic review to summarize and synthesize the literature on specific topics related to PROMs properties and use.
Current Projects
Enhancing the Use of Routinely Collected PROMs in the Health System
AHS Community Rehabilitation: Since 2019, we've partnered with the AHS Adult Community Rehabilitation program to facilitate analysis of their EQ-5D data for community outpatient and specialization rehabilitation units. Their implementation of the EQ-5D-5L began in 2017. Data is collected at intake and at end-of-episode of care. Analysis focused on describing the data cross-sectionally, as well as exploring changes over the episode of care.
Edmonton O'day-min Primary Care Network: The purpose of this study is to describe the integration of the EQ-5D-5L within a program evaluation framework in primary care in Alberta, Canada, using two program examples (in kinesiology and nutrition). This is to examine patients’ perspective by measuring their health status pre- and post-program, contributing towards a more comprehensive evaluation of the programs.
PCN Environmental Scan: The purpose of this project is to assess the PROMs tools currently administered and used in primary care in Alberta. We will examine what PROMs are being collected, for what purpose, how the results are currently reported, and explore the feasibility of standardization and consistency of PROMs within PCNs.
Worker's Compensation Board of Alberta: We are supporting the analysis and use of PROMs (EQ-5D-5L, SF-36 and various disease-specific PROMs), and how it can inform decision making around the impact of programs offered by WCB to their clients.
Stakeholder Engagement and Consultation Activity: The aim of this project is to gain insights into the perspectives of key PROMs stakeholders on current use of PROMs data within the Alberta healthcare system, and explore strategies to enhance the use of this data at the meso and macro levels within the system.
Exploring Validity of the EQ-5D-5L in Indigenous People of Canada
This project aims to investigate the validity of the EQ-5D-5L for Indigenous people in Canada. A systematic review has been completed. The next phase uses qualitative description and think aloud exercises to explore both face and content validity, and conceptual feasibility and interpretation of stated choice and health valuation tasks among Indigenous people.
UCAN-CANDU
This mixed-methods study examines the validity of quality of life measures in young children with juvenile idiopathic arthritis.
Using and presenting EQ-5D in patient decision aids (hip/knee arthroplasty)
This study will examine the effectiveness of an online, individualized patient decision aid for total knee replacement surgery to improve the quality of patient choices. The decision aid will be implemented across Alberta through the Alberta Bone and Joint Health Institute (ABJHI). This individualized decision aid is innovative in that it enables patients to consider individuals with similar characteristics, using basic demographic information and a patient-reported outcome measure (PROM) (i.e., the EQ-5D), and compare the likelihood of surgical outcomes to their unique situation.
EuroQol Data for Assessment of Population Health Needs and Instrument Evaluation (EQ-DAPHNIE):
The overall aim of the EQ-DAPHNIE project is to create research infrastructure for the EuroQol Group that would support future research projects which have specific research objectives/questions. The breadth of potential research topics would be characterized under two broad domains: 1) Population health status (e.g., develop country-specific population norms, social determinants of health and population health inequities); 2) Comparative performance and validation of instruments (e.g., EQ-HWB vs. EQ-5D-5L).
Evaluation of routinely Measured PATient reported outcomes in HemodialYsis care (“EMPATHY”) Trial:
This project aims to determine the effects of routine measurement and reporting to care providers of patient-reported outcome measures (PROMs) namely the modified Edmonton Symptom Assessment Scale – renal (mESASr) and/or the EQ-5D-5L on patient reported experience, particularly patient-clinician communication, for patients with chronic kidney disease (CKD) undergoing hemodialysis. The EMPATHY Trial will be a large, multi-center cluster randomized trial, involving up to 80 dialysis units in Ontario, Alberta and BC. The EMPATHY Trial is one project under the umbrella of a large, pan-Canadian research network known as CAN-SOLVE CKD.
Past Projects
Properties of the EQ-5D-5L in the Canadian Population: Minimal Important Difference and Comparative Performance with other Measures in Large Scale Health Applications:
This program of research has two general aims: 1) to compare the measurement properties of the EQ-5D instruments (3- and 5-level) with other generic and disease-specific measures of health status and health-related quality of life, with particular attention to the individual dimensions of the EQ-5D; and 2) to generate estimates for a minimal important difference (MID) for the EQ-5D-5L index score.
The use and measurement properties of EQ-5D in vulnerable populations: A systematic review of the literature: The objective of this review is to identify, summarize and appraise the literature on the use and measurement properties of EQ-5D instruments in socially vulnerable populations, i.e. populations who are at risk of adverse health outcomes due to the socioeconomic environment and resources; including but not limited to homelessness, substance abuse among others.
PROMs in Primary Care Networks in Alberta: An end-user perspective: APERSU’s team collaborated with the Primary Care Measurement Capacity Initiative (MCI) group led by Dr. Scott Oddie with Alberta Health Services, on a project that explored the use of PROMs in primary care networks (PCNs) in Alberta, and identified the facilitators and barriers to PROMs implementation in this setting.The scientific advisory committee identified four key areas of research that will define APERSU’s research agenda.
Applications of PROMs in clinical practice (e.g., decision aids, patient engagement, patient management, decision making, patients and clinicians perspective, clinical and cost effectiveness of PROMs)
Applications of PROMs in health systems (e.g., routine outcome measurement, quality management, quality improvement and performance, international comparisons)
Understanding of PROMs scores (e.g., minimal clinical important difference, measurement properties, comparisons across PROMs measures)
Enhancing the quality of PROMs Use (e.g., methods of data collection and presentation, methods of repeated measurements, usefulness of PROMs in special groups, response shift, case mix adjustment, knowledge transfer, translation, and utilization)