School of Psychology, Deakin University, Geelong, Australia.
The Australian Centre for Behavioural Research in Diabetes, Diabetes Victoria, Carlton, Australia.
Health Qual Life Outcomes. 2024 Sep 2;22(1):70. doi: 10.1186/s12955-024-02285-4.
Diabetes-specific quality of life (QoL) questionnaires are commonly used to assess the impact of diabetes and its management on an individual's quality of life. While several valid and reliable measures of diabetes-specific QoL exist, there is no consensus on which to use and in what setting. Furthermore, there is limited evidence of their acceptability to people with diabetes. Our aim was to explore perceptions of adults with type 1 diabetes (T1D) toward five diabetes-specific QoL measures.
Adults (aged 18 + years) with T1D living in Australia or the United Kingdom (UK) were eligible to take part in 'YourSAY: QoL', an online cross-sectional survey. Recruitment involved study promotion on diabetes-related websites and social media, as well as direct invitation of people with T1D via a hospital client list (UK only). In random order, participants completed five diabetes-specific QoL measures: Audit of Diabetes-Dependent Quality of Life (ADDQoL-19); Diabetes Care Profile: Social and Personal Factors subscale (DCP); DAWN Impact of Diabetes Profile (DIDP); Diabetes-Specific Quality of Life Scale: Burden Subscale (DSQoLS); Diabetes Quality of Life Questionnaire (Diabetes QOL-Q). They were invited to provide feedback on each questionnaire in the form of a brief free-text response. Responses were analysed using inductive, thematic template analysis.
Of the N = 1,946 adults with T1D who completed the survey, 20% (UK: n = 216, Australia: n = 168) provided qualitative responses about ≥ 1 measure. All measures received both positive and negative feedback, across four themes: (1) clarity and ease of completion, e.g., difficulty isolating impact of diabetes, dislike of hypothetical questions, and preference for 'not applicable' response options; (2) relevance and comprehensiveness, e.g., inclusion of a wide range of aspects of life to improve personal relevance; (3) length and repetition, e.g., length to be balanced against respondent burden; (4) framing and tone, e.g., preference for respectful language and avoidance of extremes.
These findings suggest opportunities to improve the relevance and acceptability of existing diabetes-specific QoL measures, and offer considerations for developing new measures, which need to be better informed by the preferences of people living with diabetes.
糖尿病特定的生活质量（QoL）问卷通常用于评估糖尿病及其管理对个人生活质量的影响。虽然存在几种有效的和可靠的糖尿病特定 QoL 测量方法，但在使用哪种方法以及在什么情况下使用方面尚无共识。此外，这些方法对糖尿病患者的可接受性的证据有限。我们的目的是探讨 1 型糖尿病（T1D）成年人对五种糖尿病特定 QoL 测量方法的看法。
居住在澳大利亚或英国（UK）的年龄在 18 岁及以上的 T1D 成年人有资格参加“YourSAY: QoL”，这是一项在线横断面调查。招募包括在糖尿病相关网站和社交媒体上进行研究推广，以及通过医院客户名单（仅限英国）直接邀请 T1D 患者。参与者以随机顺序完成五种糖尿病特定 QoL 测量方法：糖尿病依赖质量生活审计（ADDQoL-19）；糖尿病护理概况：社会和个人因素分量表（DCP）；黎明对糖尿病影响概况（DIDP）；糖尿病特定生活质量量表：负担分量表（DSQoLS）；糖尿病生活质量问卷（Diabetes QOL-Q）。他们被邀请以简短的自由文本回复的形式对每个问卷提供反馈。使用归纳、主题模板分析对回复进行分析。
在完成调查的 1946 名 T1D 成年人中，有 20%（英国：n=216，澳大利亚：n=168）对≥1 种问卷提供了定性反馈。所有的测量方法都收到了积极和消极的反馈，涉及四个主题：（1）清晰性和完成的简便性，例如，难以隔离糖尿病的影响，不喜欢假设性问题，更喜欢“不适用”的回复选项；（2）相关性和全面性，例如，纳入生活的广泛方面以提高个人相关性；（3）长度和重复性，例如，在平衡受访者负担的同时考虑长度；（4）框架和语气，例如，偏好尊重的语言和避免极端。
这些发现表明，有机会提高现有糖尿病特定 QoL 测量方法的相关性和可接受性，并为开发新的测量方法提供了考虑因素，这些新方法需要更好地了解糖尿病患者的偏好。
