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Health Expect. 2018 Apr;21(2):549-559. doi: 10.1111/hex.12649. Epub 2017 Nov 22.

Diabetes-related complications: Which research topics matter to diverse patients and caregivers?

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Department of Family and Emergency Medicine, Faculty of Medicine, Laval University, Quebec City, QC, Canada.
Office of Education and Professional Development, Faculty of Medicine, Laval University, Quebec City, QC, Canada.
Centre Hospitalier Universitaire de Québec (CHU de Québec) Research Centre [Health of populations and best health practices axis], Quebec City, QC, Canada.



Diabetes is a chronic disease with increasing prevalence worldwide. Although research has improved its treatment and management, little is known about which research topics matter to people living with diabetes, particularly among under-represented groups.


To explore the importance of research topics among a diverse range of people living with any type of diabetes or caring for someone living with any type of diabetes.


We used a convergent mixed-method design with quantitative and qualitative aspects. We surveyed a national sample of people living with diabetes and caregivers of people with diabetes, asking them to rate the importance of 10 predetermined important research topics. We also held three focus groups in two major cities to explore research concerns of people who are under-represented in research.


469 adults (57% men, 42% women) in Canada completed the online survey, indicating that all 10 areas of research mattered to them, with the highest ratings accorded to preventing and treating kidney, eye and nerve complications. Fourteen individuals participated in three focus groups and similarly noted the importance of research on those three complications. Additionally, focus group participants also noted the importance of research around daily management. No new topics were identified.


This study confirmed the importance of research topics among a population of people living with or caring for someone with diabetes. Findings from this study were used to inform the vision for Diabetes Action Canada-a pan-Canadian Strategy for Patient-Oriented Research (SPOR) Network on diabetes and its complications.


diabetes; diabetes-related complications; participatory research; patient engagement; patient involvement; patient-oriented research; stakeholder voice; under-represented populations

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