Looking Beyond HbA1c: What Outcomes Matter to Patients With Type 1 Diabetes When it Comes to Adopting Virtual Care for Self-Management Support

Abstract

Virtual health-care interventions have the potential to improve T1D outcomes, including metabolic control. We sought to understand the perspectives of individuals with T1D on self-management intervention outcomes that matter most to them. We conducted six focus groups (N=24), and performed an inductive analysis to understand self-management practices and patient-preferred outcomes towards technology and virtual care. This study will inform outcome measures used in a new virtual health-care intervention study (T1ME). Participants recounted that to adopt a self-management intervention (e.g. mobile app), it would need to decrease the time spent on self-management, ease the burden of decision-making, and safely minimize the impact of diabetes on their life. Additionally, participants felt that T1D self-management support must be individualized and strive to meet people “where they are.” We further identified the over-arching theme of “control” in T1D self-management, which was categorized into three stages: 1) learning how to adapt and apply self-management strategies to meet evolving needs; 2) managing the constant workload of living with T1D while mitigating disruptions to other aspects of daily life; and 3) gaining confidence and competence in one’s capacity to control their diabetes. Moreover, these phases are not unidirectional; instead, participants recounted moving between them depending on their changing life-stage and needs. This study highlights the importance of patient-oriented approach to health technology development, and various stages in T1D self-management where health-care interventions need to target.