Financial toxicity during pediatric cancer therapy: A qualitative analysis.

Abstract

11056 Background: Childhood cancer treatment may often result in adverse financial consequences—also termed financial toxicity (FT)—for patients and families. Limited research has specifically examined mechanisms and drivers of FT salient to pediatric oncology. Methods: Using a phenomenological approach, we conducted in-depth interviews with a purposive sample of English- and Spanish-speaking parents of children receiving treatment for cancer at our institution. Parents were interviewed 6-18 months after a first cancer diagnosis, a period chosen to balance accumulation of financial challenges after treatment initiation with minimal recall bias. Interviews were coded by 3 investigators using an inductive, open-ended approach. We performed thematic analysis of interview transcripts focused on elucidating the main components of FT and relationships between them, identifying ameliorating and exacerbating factors, and exploring the impact of FT on patient and family well-being. We organized relationships between themes into a conceptual framework. Results: We interviewed 21 parents (86% mothers, 59% >40 years old, 33% non-Hispanic White, 47% college-educated, 42% of those reporting had a household income of $50-100k, equal proportions above/below this). We identified 5 themes. Four themes pertained to primary elements of FT: (1) increased out-of-pocket spending, often related to additional caregiving and household coordination needs; (2) reduced income, primarily from employment changes inadequately covered by paid leave; (3) new material hardship, with families unable to afford costs of living when previously able to do so; and (4) elevated psychological distress regarding finances. We also identified an additional theme pertaining to response behaviors directed at managing FT, effects of which could be positive (“adaptive behaviors”), negative (“maladaptive behaviors”), or mixed. Response behaviors included reducing discretionary spending, selling off assets, skipping meals, requesting money from strangers, and rummaging through discarded items. Several exacerbating and ameliorating factors pertinent to the development of FT emerged, including household location, composition, wealth, employment flexibility, resource provision, and duration and severity of treatment. Parents provided perspectives regarding policies or interventions to mitigate FT, such as toolkits to better connect families with financial resources and extended paid family leave. Conclusions: Families of children with cancer face a wide range of financial toxicity throughout treatment, and many of these experiences differ considerably from those of adult patients. Many families reported substantial impact and unmet needs. These findings will help inform the design of quantitative measures specific to pediatric cancer and identify unique targets for intervention development and policy change for children with cancer.