Resources to Support Families Navigating Early-Stage Type 1 Diabetes: Protocol for a Scoping Review

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Abstract
Background: Advances in the understanding of type 1 diabetes (T1D) natural history have enabled screening for islet autoantibodies and the detection of presymptomatic (early-stage) T1D prior to clinical presentation and the need for insulin replacement therapy. As screening programs expand, increasing numbers of children are being identified with early-stage T1D, creating a pressing need for relevant, accessible, evidence-based educational resources. Due to the rapidly changing paradigm of T1D care in such settings, many health care professionals currently lack awareness or guidance on which educational resources to recommend to families. To date, no review has systematically identified and evaluated educational resources for families navigating early-stage T1D or for health care professionals supporting them. Objective: This scoping review aims to (1) systematically identify and evaluate educational resources for early-stage T1D; (2) assess resource readability, understandability, quality, and credibility; (3) create an inventory of resources consistent with current care and health literacy guidelines; and (4) identify resource gaps and priorities for future development. Methods: A comprehensive search of peer-reviewed (MEDLINE, CINAHL, PsycInfo, and Scopus) and gray literature databases (Google advanced searches and targeted searches of professional organizations, advocacy groups, research consortiums, and screening programs) will be conducted to identify English-language resources (eg, fact sheets, websites, videos, and infographics). Resources must target, or be suitable for adaptation for, audiences including youth (aged <25 years), families, parents, carers, and/or health care professionals. Resources must provide information about early-stage T1D, monitoring of early-stage T1D, trajectories, psychosocial aspects, or care navigation. Eligible resources will undergo standardized assessment using validated tools for readability (Flesch-Kincaid Grade Level [FKGL] and Simple Measure of Gobbledygook [SMOG]), understandability (Patient Education Materials Assessment Tool [PEMAT]), information quality (Quality Evaluation Scoring Tool [QUEST]), and credibility (adherence to current early-stage T1D guidelines). Two reviewers will abstract data using a charting tool prepared for the study. Results: Resources will be grouped by type, audience, and origin. Readability, understandability, quality, and credibility assessments will be presented in tables. Resource gaps will be identified to make recommendations for future resource development. The review will begin in March 2026, and data extraction and analysis will be completed by August 2026, with manuscript submission by October 2026. Conclusions: This paper presents the protocol for the first scoping review to systematically compile and appraise educational resources for early-stage T1D. The findings will offer a clear overview of the current resource landscape, identify gaps, highlight resources that adhere to current early-stage T1D and health literacy guidelines, and provide a foundation for future development and co-design of fit-for-purpose materials.

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