Financial toxicity refers to the adverse effects of healthcare-related costs on individuals undergoing medical treatment, encompassing both financial strain and emotional distress. While significant research exists on financial toxicity in various patient populations, there is a gap in understanding its impact on individuals with congenital conditions like spina bifida. Our team previously developed a questionnaire based on semi-structured interviews with patients and caregivers to identify themes related to financial burdens in this population. The current study aimed to validate this patient-reported outcomes measure tool. Collaborating with the Spina Bifida Association, we distributed the tool through their listserv and social media to reach patients and caregivers. The patient survey comprised 19 questions, while the caregiver version included 20. We conducted descriptive analyses to evaluate data quality and confirmatory factor analysis to examine the factor structure and reliability of the surveys. A total of 180 patients and their caregivers participated in the study, with 67% of participants reporting household incomes below $50,000. Among the 93 caregivers, 30% fell into the same income bracket. Confirmatory factor analyses revealed that a one-factor model fit the patient survey data well (comparative fit index [CFI] = 0.96, root mean square error [RMSEA] = 0.08, standardized root mean square residual [SRMR] = 0.05) and similarly for the parent survey data (CFI = 0.93, RMSEA = 0.12, SRMR = 0.09). Both factor structures demonstrated reliability, with internal consistency scores of 0.94 for both surveys. This validated instrument is essential for guiding clinicians in counseling families and identifying those at risk for financial toxicity, paving the way for early intervention through case management and social work.
November 4, 2024
