Toward identification and intervention to address financial toxicity and unmet health-related social needs among adolescents and emerging adults with cancer and their caregivers: A cross-cultural perspective

Purpose: We qualitatively explored the unique needs and preferences for financial toxicity screening and interventions to address financial toxicity among adolescents and emerging adults (younger AYAs: 15–25 years) with cancer and their caregivers. 

Methods: We recruited English- or Spanish-speaking younger AYAs who were treated for cancer within the past 2 years and their caregivers. Semi-structured interviews were conducted to explore preferences for screening and interventional study development to address financial toxicity. The data were coded using conventional content analysis. Codes were reviewed with the study team, and interviews continued until saturation was reached; codes were consolidated into categories and themes during consensus discussions. 

Results: We interviewed 17 participants; nine were younger AYAs. Seven of the 17 preferred to speak Spanish. We identified three cross-cutting themes: burden, support, and routine, consistent, and clear. The burden came in the form of unexpected costs such as transportation to appointments, as well as emotional burdens such as AYAs worrying about how much their family sacrificed for their care or caregivers worrying about the AYA's physical and financial future. Support, in the form of familial, community, healthcare institution, and insurance, was critical to mitigating the effects of financial toxicity in this population. Participants emphasized the importance of meeting individual financial needs by routinely and consistently asking about financial factors and providing clear guidance to navigate these needs. 

Conclusion: Younger AYAs and their caregivers experience significant financial challenges and unmet health-related social needs during cancer treatment and often rely on key supports to alleviate these unmet needs. When developing interventions to mitigate financial toxicity, clinicians and health systems should prioritize clear, consistent, and tailorable approaches to support younger AYA cancer survivors and their families.