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

The Patient - Patient-Centered Outcomes Research Pub Date : 2024-04-06 DOI:10.1007/s40271-024-00688-5

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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.

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糖尿病研究事关重大：与澳大利亚成年糖尿病患者及其家人进行的三轮优先事项确定调查咨询

摘要目的我们旨在确定澳大利亚糖尿病患者或其家庭成员的健康和生活质量研究重点。方法我们通过反复进行的三步在线调查过程：(1) 针对 "需要开展哪些研究来帮助糖尿病患者过上更好的生活？"这一问题，定性地提出研究课题（长清单）；(2) 确定最重要的研究问题（短清单）；(3) 按照重要性（优先顺序）对研究问题进行排序。我们的目标是招募 N = 800 名参与者，其中糖尿病类型和家庭成员的代表性大致相当。结果参与者（N = 661）均为澳大利亚成年人（18 岁以上），自我报告诊断患有糖尿病（1 型，n = 302；2 型，n = 204；既往/当前妊娠期，n = 58；不常见类型，n = 22，或家庭成员，n = 75）。调查 2 和 3 的保留率分别为 47%（n = 295）和 50%（n = 316）。从 1549 份开放文本回复中，按主题确定了 25 个主题和 125 个研究问题。不同组群的研究重点各不相同，因此每个组群都制定了具体的清单并进行了排序。1 型糖尿病队列中排名最高的研究问题是 "如何改进糖尿病技术......？"，2 型糖尿病队列中排名最高的研究问题是 "如何逆转胰岛素抵抗......？所有组群的最终清单都有一个共同的问题："糖尿病的病因或诱因是什么？在不同组群中，最优先考虑的问题被认为具有相似的重要性。结论不同糖尿病类型和家庭成员的研究重点大不相同。这些发现应为资助机构和研究人员提供信息，使未来的研究及其交流符合社区需求。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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The Patient - Patient-Centered Outcomes Research

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