Co-Creation of a Digital Intervention to Enhance Financial Capability Among Young Adult Cancer Survivors

Background and Purpose: Healthcare-related financial hardship, or financial toxicity, occurs at higher rates among young adults with cancer (YA; those diagnosed at age 18-39 years) than in other age groups. The harmful clinical and psychosocial impacts of financial toxicity are well-established and include decreased adherence to treatment and survivorship care because of the cost; higher rates of anxiety, worry, and distress; and increased risk of bankruptcy, medical debt, and other profound financial consequences. In addition to systemic solutions to address the structural roots of financial toxicity, interventions at the patient-level are needed, including those that provide YAs with the knowledge and skills to navigate the financial aspects of the healthcare system. This study aimed to co-create a digital intervention to address two modifiable factors associated with financial toxicity, financial capability (i.e., knowledge and behaviors related to how resources are managed and how financial decisions are made) and cost-related health literacy (i.e., ability to understand financial concepts related to healthcare, engage in discussions of finances as they relate to decisions about treatment, and access appropriate resources to address financial stress) among YA survivors of cancer.

Methods: Eligible participants were aged 18-39 years and had previously received treatment for cancer in the US. Potential participants were recruited in clinic, through patient lists, and via word of mouth to participate in 1:1 semi-structured interviews (or to provide narrative feedback) relating to their experiences of financial toxicity; desired information to prepare YA patients with cancer for the financial aspects of treatment; and preferred mechanisms for content delivery. Transcripts and written responses were analyzed using a rapid thematic approach. Key themes informed the creation and development of a digital skill-building intervention rooted in social cognitive theory, with iterative feedback from YAs sought throughout the process.

Results: Eleven clinically and demographically diverse YA survivors provided qualitative feedback, and two YA survivors and one YA caregiver were imbedded on the research team. Although YA respondents reported a host of financial concerns relating to their treatment and survivorship care (e.g., payment methods, crowdfunding, borrowing money), three primary areas of concern emerged and were used to inform intervention development: health insurance navigation, budgeting, and medical debt management. Intervention development included script writing, character and storyboard design, and testing of interactive engagement activities to reinforce learning, with all elements then programmed into an animated web-based environment. Iterative feedback and refinement processes continued until the intervention was deemed suitable for feasibility and preliminary efficacy testing by the YA survivors and research team.

Conclusion: This study describes the development and refinement of a novel theory-based digital intervention to improve the financial capability of YA survivors of cancer. Patient/survivor-facing financial toxicity interventions are needed to provide YAs the skills and language to engage with the financial aspect of their care to ensure that financial concerns do not become barriers to care. Findings from this study can inform future testing of this and similar interventions as well as efforts to integrate financial education and counseling into the psychosocial counseling social workers provide.