Beyond Hemoglobin A1c—Outcomes That Matter to Individuals With Type 1 Diabetes in Adopting Digital Health Interventions for Self-Management Support: Qualitative Study

Abstract

BackgroundType 1 diabetes is a demanding chronic condition that requires diligent blood glucose monitoring and timely insulin administration by patients who must integrate self-management into their daily lives. ObjectiveThis study aimed to better understand what outcome measures are important to individuals living with type 1 diabetes (T1D) in Ontario, Canada, to help inform the development of type 1 diabetes virtual self-management Education and support (T1ME) trial. MethodsA qualitative approach was used, in which we conducted 6 focus groups with a total of 24 adult participants living with T1D (from age 18 to >65 years) in Ontario. Each focus group was semistructured in nature; participants were encouraged to talk openly about their experiences with T1D self-management and provide their perspectives on more focused topics such as technology and relationships with health care providers. ResultsAn interpretive analysis helped us devise a framework for our results that centered around 6 main discussion themes: (1) adapting self-management to meet evolving needs, (2) looking “beyond A1c” toward more personalized indicators of glycemic management, (3) the benefits and challenges of adopting new T1D technology, (4) establishing trusting relationships with diabetes care providers, (5) perceived benefits of peer support, and (6) pre– and post–COVID-19 perspectives on virtual care. ConclusionsOur goal is for these findings to help facilitate the development of patient-oriented outcome measures that are in line with the unique needs and preferences of T1D patients in this new, more virtual landscape of clinical care, education, and self-management support.