Insights into Knowledge and Attitudes About Autoantibody Screening from People Affected by Type 1 Diabetes: A Brief Report.

IF 3.8 3区医学 Q2 Medicine Diabetes Therapy Pub Date : 2024-10-01 Epub Date: 2024-08-27 DOI:10.1007/s13300-024-01637-z

Caitlin S Kelly, Wendy A Wolf, Emilee M Cornelius, Megan E Peter, Katherine S Chapman, Jessica L Dunne

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Abstract

Introduction: Screening for islet-specific autoantibodies can identify individuals at risk for type 1 diabetes (T1D). Despite calls for increased nationwide autoantibody screening efforts, it is unclear how many individuals have participated in screening among people who may benefit from it. Moreover, knowledge and perceptions of autoantibody screening in real-world samples are not well understood.

Methods: We surveyed a sample of individuals (aged 18+ years old) from T1D Exchange Registry with a personal or family history of T1D to assess their self-reported T1D autoantibody knowledge, experiences, and attitudes. Participants belonged to one of three groups: adults with T1D who had a biological child without T1D or future plans for a child (PWD); parents without T1D who had a biological child with T1D and one or more biological children without T1D (Caregivers); and first-degree adult children or siblings to a person with T1D (Relatives). Descriptive analyses (means, standard deviations, frequencies) are presented by participant groups.

Results: A total of 510 participants enrolled in the study. Across groups, participants reported feeling a little to somewhat knowledgeable about autoantibody screening and positive perceptions of autoantibody screening in general. However, few participants had screened their child without T1D (PWDs, 21.94%; Caregivers, 46.30%) or themselves (Relatives, 19.23%). Among those who had screened, participants reported generally positive experiences. Among those who had not screened, many participants were "undecided" about autoantibody screening (PWD, 38.46%; Caregivers, 40.52%; Relatives, 44.44%). Influences reported for participants' decisions to screen, not screen, or their current indecision differed by group: PWDs (21.70%) and Caregivers (26.87%) most often reported self-initiated research as an influence and Relatives reported they had not previously considered screening (48.28%).

Conclusion: Results highlight the need for more accessible information about screening, including real experiences from those who have screened.

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深入了解 1 型糖尿病患者对自身抗体筛查的认识和态度：简要报告。

简介：筛查胰岛特异性自身抗体可以识别 1 型糖尿病 (T1D) 的高危人群。尽管人们呼吁加强全国范围内的自身抗体筛查工作，但目前还不清楚有多少人参加了筛查，而这些人可能会从中受益。此外，现实世界样本对自身抗体筛查的了解和看法也不甚了解：我们对 T1D Exchange Registry 中有 T1D 个人或家族病史的个人（18 岁以上）进行了抽样调查，以评估他们自我报告的 T1D 自身抗体知识、经验和态度。参与者分为三组：有一个没有 T1D 的亲生孩子或未来计划要孩子的 T1D 成人（PWD）；有一个有 T1D 的亲生孩子和一个或多个没有 T1D 的亲生孩子的没有 T1D 的父母（Caregivers）；T1D 患者的一级成年子女或兄弟姐妹（Relatives）。结果显示了各组参与者的描述性分析（平均值、标准差、频率）：共有 510 人参加了研究。在所有组别中，参与者均表示对自身抗体筛查略知一二，并对自身抗体筛查持积极态度。然而，很少有参与者为其未患 T1D 的子女（残疾人，21.94%；照顾者，46.30%）或自己（亲属，19.23%）进行过筛查。在进行过筛查的参与者中，他们普遍报告了积极的经历。在未进行过筛查的参与者中，许多人对自身抗体筛查持 "犹豫不决 "态度（残疾人，38.46%；照顾者，40.52%；亲属，44.44%）。不同群体的参与者在决定进行筛查、不进行筛查或目前犹豫不决时受到的影响有所不同：残疾人（21.70%）和照护者（26.87%）最常报告的影响因素是自己主动进行的研究，而亲属报告说他们以前没有考虑过筛查（48.28%）：结论：研究结果表明，有必要提供更多有关筛查的信息，包括筛查者的真实经历。

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来源期刊

Diabetes Therapy Medicine-Endocrinology, Diabetes and Metabolism

CiteScore

6.90

自引率

7.90%

发文量

130

审稿时长

6 weeks

期刊介绍： Diabetes Therapy is an international, peer reviewed, rapid-publication (peer review in 2 weeks, published 3–4 weeks from acceptance) journal dedicated to the publication of high-quality clinical (all phases), observational, real-world, and health outcomes research around the discovery, development, and use of therapeutics and interventions (including devices) across all areas of diabetes. Studies relating to diagnostics and diagnosis, pharmacoeconomics, public health, epidemiology, quality of life, and patient care, management, and education are also encouraged. The journal is of interest to a broad audience of healthcare professionals and publishes original research, reviews, communications and letters. The journal is read by a global audience and receives submissions from all over the world. Diabetes Therapy will consider all scientifically sound research be it positive, confirmatory or negative data. Submissions are welcomed whether they relate to an international and/or a country-specific audience, something that is crucially important when researchers are trying to target more specific patient populations. This inclusive approach allows the journal to assist in the dissemination of all scientifically and ethically sound research.