Diabetes Distress and Unmet Support Needs Hinder Optimal Care for Adolescents With Type 2 Diabetes: A Mixed Methods Study

Abstract

Objectives: Adolescents with type 2 diabetes (T2D) are more likely than those with type 1 diabetes (T1D) to develop complications soon after diagnosis. However, limited data exist about diabetes-specific distress (DD) and how diabetes teams can better support adolescents with T2D. We aimed to assess DD and other aspects of emotional/mental health among adolescents with T2D and qualitatively explore their lived experience and support needs. Methods: This study used a cross-sectional mixed methods survey of adolescents with T2D, recruited via two tertiary diabetes clinics. Study outcomes included the Diabetes Distress Scale (DDS), World Health Organization-Five Well-being Index (WHO-5), Patient Health Questionnaire-2 (PHQ-2) and two free-text questions concerning what they wished their health professionals understood about living with T2D and diabetes support. Descriptive statistics and inductive thematic analysis were applied. Results: Forty adolescents with T2D (22 females, predominantly from non-Indigenous background) completed all questionnaires. Nineteen were taking metformin, 18 were taking metformin plus injectables, and 3 were on lifestyle management. They had mean ± standard deviation (SD) age of 15.7 ± 2.1 years, median (interquartile range [IQR]) diabetes duration of 1.8 (0.8-2.6) years and median (IQR) glycated haemoglobin (HbA1c) of 6.9 (6.0-9.5)% (52 [42-80] mmol/mol). Twenty-one (53%) adolescents had moderate-to-severe DD, 16 (40%) had suboptimal emotional well-being, and 23 (58%) had depressive symptoms; 15 (38%) had both DD and depressive symptoms, while 11 (28%) had neither. Four themes described what adolescents wished their health professionals understood about living with diabetes: diabetes stigma, diabetes management burden, diabetes is challenging for young people and impact on mental health. Five themes described the support adolescents desired from their diabetes teams: show empathy and assist with motivation; mental health support; more frequent and convenient appointments; access to, and choice of, medications and management tools; and discussions about the future. Conclusions: Most adolescents with T2D experience significant DD, impaired general emotional well-being and/or depressive symptoms. They also have considerable unmet support needs relevant to optimising their well-being and diabetes self-management.

Keywords: adolescents; diabetes distress; healthcare needs; type 2 diabetes; youth.

Figure 1

Cumulative emotional health burden (diabetes distress, emotional well-being and depressive symptoms). Note. The area of each circle is representative of the total sample size in that group.