Financial Toxicity in Spina Bifida: Development of a Patient and Caregiver Questionnaire

To develop and validate the first patient- and caregiver-reported measure of spina bifida-specific "financial toxicity" (SBFT), that is, the negative side effects of healthcare-related expenditures. Assessing financial toxicity is a growing area of research in both oncology and benign urology.

We developed a 20-item questionnaire and quantitatively validated it in a population of SB patients and caregivers. We distributed these through email and online platforms. Validation was accomplished via descriptive and other statistical analyses; confirmatory factor analysis was used to examine the appropriateness of a one-factor model, and internal consistency was used for reliability. ANOVA and independent samples t tests were used for assessing associations.

Participants included 180 patients and 93 caregivers. Each version of the questionnaire was found to assess a single dimension of SBFT. For patients, annual household income of <$25,000 was associated with increased SBFT while a lack of emergency department/urgent care visits was associated with reduced SBFT. For caregivers, annual household income of <$25,000, lack of health insurance, and younger age were at high risk for SBFT (all P-values <.05).

This study provides a new tool for stratifying financial toxicity risk for SB patients and their caregivers. Implementing this questionnaire in clinical settings may help identify families who could benefit from early social and economic interventions.