Abstract
AIMS: Islet cell transplantation can functionally cure type 1 diabetes complicated by hypoglycemia unawareness (HU), but requires immunosuppression. This study identified the lived experiences and risk/benefit considerations of patients pre-transplant. METHODS: Content analysis identified themes from four open-ended questions pre-transplant in an islet transplant clinical trial. The sample included 23 (19 female) patients, with a mean age = 48.3 and diabetes duration = 29.3 years. RESULTS: Lack of control due to diabetes and HU was the overarching theme pre-transplant. Four sub-themes were also identified: fear of hypoglycemia, diabetes-related complications, hopes/expectations after transplant, and transplant outcomes. Patients expressed fear of HU and long-term complications pre-transplant, and hoped islet transplant would improve diabetes management. Patients further emphasized anxiety over burdening others, and hopes of advancing research. In addition, other patients emphasized frustrations regarding the impact of HU on themselves, such as the inability to perform activities of daily living. Many patients were primarily worried about immunosuppressive side effects rather than islet transplant success. CONCLUSIONS: Patients viewed islet transplantation as a means to gain autonomy and control over their lives. They desired reduced anxiety associated with HU, despite concerns over immunosuppressive side-effects. These findings need confirmation, but may help to further improve patient education and patient-provider communication.