Financial toxicity among individuals with spina bifida and their families: A qualitative study and conceptual model.

INTRODUCTION: Spina bifida is the most common permanently disabling birth defect in the United States and requires lifelong, multi-specialty care. The cost of such care has the potential to result in financial toxicity - the 'objective financial burden' and 'subjective financial distress' which can negatively impact clinical outcomes. While this concept has been extensively studied in other areas of medicine, particularly oncology, financial toxicity has not yet been examined in pediatric urology or in individuals with spina bifida and their families/caregivers. OBJECTIVE: To qualitatively explore the presence of financial toxicity in individuals with spina bifida and their caregivers with the objective of identifying themes and creating a conceptual model. MATERIALS AND METHODS: We conducted semi-structured interviews with individuals with spina bifida and/or their caregivers with the aim of eliciting information regarding financial distress associated with spina bifida care. Interviews were transcribed and qualitative thematic analysis was performed to identify recurring themes. These insights were used to create a conceptual model of financial toxicity among individuals with spina bifida. RESULTS: A total of 14 interviews were conducted (total of 6 patients and 13 parents/caregivers). Average patient age was 17.9 years. Five dominant themes were identified: 1) resources (insurance type, community support, etc.), 2) direct costs (copays, deductibles, travel expenses, etc.), 3) indirect costs (lost work time, hindered career advancement, resource navigation burden, etc.), 4) coping (work adjustments, decreased spending, etc.), and 5) affect (lack of control, uncertainty, worry, etc.). These insights were used to create a conceptual model. DISCUSSION: This is the first study to explore financial toxicity in spina bifida and establish a conceptual model. Our findings are corroborated by prior spina bifida literature and are closely mirrored by studies in cancer patients. Given that financial toxicity is associated with negative outcomes in other medical domains, the impact of financial toxicity on health outcomes among individuals with spina bifida warrants further study, particularly in instrument development to better understand and quantify financial toxicity in this group. CONCLUSION: Financial toxicity is a concern among individuals with spina bifida and their caregivers. This concept will need to be investigated further in order to develop validated measurement tools, identify solutions, and provide optimal care; our conceptual model will help guide these future investigations.

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