People with type 1 diabetes (T1D) and caregivers of minors with T1D experience significant impact to many aspects of daily life. The impact of diabetes is not limited to monetary costs assessed by healthcare and economic data, but also includes the “cost” of sacrifices, such as sleep disruption and time lost. Limited research exists regarding daily disruptions and missed opportunities due to T1D. This study aimed to identify other aspects that are impacted by T1D in patients and caregivers living in the U.S. Six focus groups were conducted based on previously identified themes regarding finances, missed opportunities, and disruptions in daily activities from patients, caregivers and health care provider interviews. The current study conducted focus groups with people with T1D, ages 23-72 (n=17) and caregivers ages 34-55 (n=14), of minors with T1D. Five focus groups were conducted online and one was conducted in-person (San Diego, CA) with a total of 31 participants. All participants were recruited from T1D Exchange Glu (www.myglu.org), an online community for individuals living with T1D. Focus groups were audio-recorded, transcribed, and thematically analyzed. Participants reported issues with sleep, finance, health insurance (including obtaining supplies), and disruptions in work and school as most impacted by T1D. Overall, the majority of participants reported that their sleep was most impacted. Patients and caregivers experienced substantial amounts of sleep loss due to device alarms and night time blood glucose excursions as well as taking preventative actions to avoid excursions. People with T1D reported time dedicated to managing diabetes had a greater impact on life, while caregivers reported financial and employment sacrifices had the most impact. This study provides insight into the real-world impact of diabetes beyond the more commonly studied healthcare costs.
J. Bispham: None. A. Hughes: None. M. Perez-Nieves: Employee; Self; Eli Lilly and Company. Stock/Shareholder; Self; Eli Lilly and Company. L. Fan: Employee; Self; Lilly Diabetes. Stock/Shareholder; Self; Lilly Diabetes. A. McAuliffe-Fogarty: None.