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; Jane Speight

doi:10.1007/s40271-024-00688-5

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

Patient. 2024 Apr 6. doi: 10.1007/s40271-024-00688-5. Online ahead of print.

Authors

Christel Hendrieckx^{1

2

3}, Sienna Russell-Green^{1

2}, Timothy Skinner^{2

4}, Ashley H Ng⁵, Chris Lee⁶, Siobhan Barlow⁷, Alan Davey⁷, Caitlin Rogers⁷, Elizabeth Holmes-Truscott^{8

9

10}, Jane Speight^{1

2

3}

Affiliations

¹ School of Psychology, Deakin University, 1-11 Gheringhap Street, Geelong, VIC, 3220, Australia.
² The Australian Centre for Behavioural Research in Diabetes, Diabetes Victoria, Melbourne, VIC, Australia.
³ Institute for Health Transformation, Deakin University, Geelong, VIC, Australia.
⁴ Department of Psychology, Counselling and Therapy, La Trobe University, Melbourne, VIC, Australia.
⁵ Monash Partners Academic Health Science Centre, Melbourne, VIC, Australia.
⁶ National Aboriginal Community Controlled Health Organisation, Canberra, ACT, Australia.
⁷ Diabetes Research Matters Steering Group, Melbourne, Australia.
⁸ School of Psychology, Deakin University, 1-11 Gheringhap Street, Geelong, VIC, 3220, Australia. etruscott@acbrd.org.au.
⁹ The Australian Centre for Behavioural Research in Diabetes, Diabetes Victoria, Melbourne, VIC, Australia. etruscott@acbrd.org.au.
¹⁰ Institute for Health Transformation, Deakin University, Geelong, VIC, Australia. etruscott@acbrd.org.au.

PMID: 38582797
DOI: 10.1007/s40271-024-00688-5

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.