European Survey on Adults with Type 1 Diabetes and their Caregivers: Insights into Personal Experience and Needs for Improving Diabetes Care.

Introduction: Type 1 diabetes (T1D) requires constant self-management and substantially impacts daily life. We surveyed the experiences/burdens of people with T1D (PWD) and their caregivers.

Methods: An online survey of PWD/caregivers (aged ≥ 18 years) living in five European countries was conducted from July to August 2021. The survey included questions on the impact of T1D on physical and mental abilities, the frequency of hypoglycemic and hyperglycemic episodes and the impact of T1D on the daily lives of PWD.

Results: Respondents included 458 PWD and 54 caregivers. The main impacts of T1D included fatigue (50% of PWD rated a high/very high impact), a hindrance to daily activities (43%), feeling different than others (42%), and anxiety (40%). The perceived impact of complication risk was significantly lower for PWD paying more attention to controlling their disease (p < 0.001). Most caregivers (80%) reported feeling more anxious than the PWD about their T1D complications. Hypoglycemia/hyperglycemia was a significant predictor of perceived distress owing to T1D. Most PWD (68%) would have liked more psychological support. Over half of respondents (PWD: 53%, caregivers: 56%) felt they had insufficient knowledge about T1D. Acceptance, positivity, and self-organization are the main strategies recommended by PWD/caregivers for living with T1D.

Conclusions: T1D remains a significant burden for PWD/caregivers, and more educational and psychological support for T1D management is required.