Mixed-methods analysis reveals chronic disease beneficiaries face high out-of-pocket costs, indicating a need for insurance redesign.
There remains a persistent lack of patient-centered evidence on insurance reform and real-world experiences of patients with chronic disease. This study gathered insights around insurance design from chronic disease beneficiaries. This mixed-methods analysis comprised an online survey and virtual focus group sessions (August to December 2023) involving US residents with chronic disease and health insurance. Patients’ perspectives on insurance design were explored. Survey data were analyzed descriptively. Key themes were identified from focus group transcripts and direct observations. In total, 146 patients across 15 chronic diseases completed the survey; 29 then participated in focus groups. Although most beneficiaries were satisfied with their health plan, concerns centered on prescription medication affordability due to high deductibles and cost exposure, the disproportionate effects of cost exposure based on income, and the unpredictability of out-of-pocket costs. For some, the financial burden led to financial debt, therapy abandonment, mental health issues, and/or worsening of their condition. Overall, there was broad support for policy solutions to redesign insurance and adjust cost exposure for patients with chronic disease. This research offers valuable patient insights into health insurance design in the US to ensure patients’ needs are addressed.
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Doherty et al. (2025) studied this question.
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