Financial toxicity as a source of diabetes distress resulting in cost coping strategies in emerging adults with type 1 diabetes in the United States

AIMS: Despite advancements in diabetes care, up to one in four Americans report rationing insulin due to cost concerns; emerging adults are especially susceptible to cost worries as they transition away from family support. Financial toxicity may help elucidate how emerging adults with type 1 diabetes (T1D) experience emotional burden. This study aimed to understand how emerging adults with T1D describe subjective financial distress, objective financial burden and difficulties navigating health insurance coverage. METHODS: A qualitative descriptive design using semi-structured interviews. Analysis was completed using standard qualitative content analysis procedures. RESULTS: Participants included 8 men and 7 women, 80% identified as White with a median age of 24 years and diabetes duration of 12 years. Sixty percent were on their parents' health insurance and 100% used diabetes technology. Four themes emerged: (1) diabetes distress is substantial and embedded within the developmental stage of emerging adulthood; (2) diabetes distress includes the new responsibility of affording diabetes care independently, which participants experience as an emotional burden, both in the present and when contemplating the future; (3) financial costs of diabetes are exacerbated by insurance barriers, leading to inadequate access to management resources; and (4) emerging adults endorse cost coping strategies, both in the present and when planning for the future. CONCLUSIONS: Emerging adults with T1D experience financial toxicity as a source of diabetes distress, leading to cost coping strategies, which are embedded in the larger context of the demands of this developmental stage.