Diabetes Research Matters: A Three-Round Priority-Setting Survey Consultation with Adults Living with Diabetes and Family Members in Australia

Christel Hendrieckx, Sienna Russell-Green, Timothy Skinner, Ashley H. Ng, Chris Lee, Siobhan Barlow, Alan Davey, Caitlin Rogers, Elizabeth Holmes-Truscott () and Jane Speight
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Christel Hendrieckx: Deakin University
Sienna Russell-Green: Deakin University
Timothy Skinner: The Australian Centre for Behavioural Research in Diabetes, Diabetes Victoria
Ashley H. Ng: Monash Partners Academic Health Science Centre
Chris Lee: National Aboriginal Community Controlled Health Organisation
Siobhan Barlow: Diabetes Research Matters Steering Group
Alan Davey: Diabetes Research Matters Steering Group
Caitlin Rogers: Diabetes Research Matters Steering Group
Elizabeth Holmes-Truscott: Deakin University
Jane Speight: Deakin University

The Patient: Patient-Centered Outcomes Research, 2024, vol. 17, issue 4, No 8, 455 pages

Abstract: Abstract Objective We aimed to identify the health and quality-of-life research priorities of Australians with diabetes or family members. Methods Through an iterative, three-step, online survey process we (1) qualitatively generated research topics (long list) in response to one question “What research is needed to support people with diabetes to live a better life?”; (2) determined the most important research questions (short list); and (3) ranked research questions in order of importance (priorities). We aimed to recruit N = 800 participants, with approximate equal representation of diabetes type and family members. Results Participants (N = 661) were adults (aged 18+ years) in Australia with a self-reporting diagnosis of diabetes (type 1, n = 302; type 2, n = 204; prior/current gestational, n = 58; less common types, n = 22, or a family member, n = 75). Retention rates for Surveys 2 and 3 were 47% (n = 295) and 50% (n = 316), respectively. From 1549 open-text responses, 25 topics and 125 research questions were identified thematically. Research priorities differed by cohort, resulting in specific lists developed and ranked by each cohort. The top-ranked research question for the type 1 diabetes cohort was “How can diabetes technology be improved …?” and for the type 2 diabetes cohort: “How can insulin resistance be reversed …?”. One question was common to the final lists of all cohorts: “What are the causes or triggers of diabetes?” Within cohorts, the top priorities were perceived as being of similar importance. Conclusions The research priorities differ substantially by diabetes type and for family members. These findings should inform funding bodies and researchers, to align future research and its communication with community needs.

Date: 2024
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DOI: 10.1007/s40271-024-00688-5

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