Exploring Attitudes toward Autoantibody Screening in People Living with T1D, Caregivers, and First-Degree Relatives

DIABETES(2023)

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Abstract
Background: T1D autoantibodies can be detected months to years before disease onset, but few people undergo screening. We explored attitudes toward autoantibody screening in people with T1D and caregivers and relatives of people with T1D. Methods: Participants were recruited from the T1D Exchange Registry or referred by an Online Registry participant. Guided by the Health Belief Model, we conducted 4 focus groups with 26 participants (11 adults with T1D with a child without T1D; 8 caregivers to a child with T1D and a child without T1D; 7 biological siblings to a person with T1D). Transcripts were analyzed using NVivo. Results: Responses are summarized in Table 1. Most participants held positive attitudes toward screening. The most common perceived benefit was to obtain knowledge; the anticipated emotional burden of a positive screen was the most frequently reported barrier. Anxiety and relief were emotions associated with a positive and negative screen, respectively. Participants desired information about antibody screening and its interpretation and accuracy. A healthcare providers’ recommendation might prompt the decision to screen. Conclusions: Participants expressed positive attitudes and perceived benefits of autoantibody screening but also reported barriers to screening, particularly the emotional burden of a positive result. Disclosure M.Peter: None. K.S.M.Chapman: None. J.L.Dunne: Employee; Janssen Research & Development, LLC. C.S.Kelly: None. W.Wolf: None.
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Key words
autoantibody screening,caregivers,attitudes,first-degree
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