Development and Content Validation of the Perceived Barriers to Diabetes Self-Management Scale (PB-DSMS) Among Adolescents and Young Adults With Type 1 Diabetes

PURPOSE: The purpose of this study is to develop and establish content validity evidence for the Perceived Barriers to Diabetes Self-Management Scale (PB-DSMS) for adolescents and young adults (15-39 years) with type 1 diabetes mellitus (T1DM). METHODS: A methodological scale-development and content-validation study was conducted in June 2023. Item generation was guided by the social ecological model and informed by a synthesis of qualitative literature on barriers to diabetes self-management. An initial pool of 57 items was generated and subsequently refined to 47 items through internal review. Content validity was evaluated by a multidisciplinary panel of 6 experts using the item-level content validity index (I-CVI), scale-level content validity index, and modified kappa statistics. Cognitive interviews with 6 individuals with T1DM were conducted to evaluate item clarity, comprehensibility, and contextual relevance, and findings were incorporated into item refinement. RESULTS: Eight domains of perceived barriers were identified: lack of knowledge and skills, psychological barriers, time constraints and competing life priorities, lack of family support, lack of community/peer support, health system-related barriers, availability and accessibility barriers, and digital barriers. Of the 47 preliminary items, 43 achieved an excellent I-CVI. Cognitive interviews supported the comprehensibility and contextual relevance of the instrument and informed item refinement. Following expert review and cognitive interviewing, 4 items were removed and 16 items were revised, resulting in a final 44-item scale. CONCLUSION: The PB-DSMS is a comprehensive, patient-informed, and contextually relevant instrument for assessing perceived barriers to diabetes self-management among adolescents and young adults with T1DM. It has the potential to facilitate patient-centered assessment and support the development of targeted interventions to improve diabetes self-management in clinical practice and research.