Navigating Financial and Health-Related Social Needs in Adolescent and Young Adult Cancer Survivors (AYA-NAV): A Digital Intervention Pilot Study

Adolescent and young adult (AYA) cancer survivors represent a growing population due to recent advances in cancer treatment. AYA survivors, defined by the National Cancer Institute as aged 15-39 years, experience a high burden of chronic health conditions, and they face devastating financial toxicity, defined as the negative personal financial impact of healthcare costs. Financial toxicity results not only from the cost of care, but also from unmet health-related social needs (HRSN: food insecurity, un/underinsurance, unstable housing, suboptimal education, and unemployment). We are currently testing an adapted adult model of financial navigation intervention for AYAs with cancer who screen positive for financial toxicity or unmet HRSN.

As in the adult model, our intervention is delivered in partnership with a nonprofit organization that provides telephone-based case management and needs navigation to people with life-limiting illnesses. In our study, AYAs are interested and consent to participate, however, uptake and sustained engagement with the intervention model are rarely observed. We now propose to refine our current, low-technology model to a digital platform and add vocational navigation to better engage AYAs and address their unmet HRSN. Findhelp.org is an established, digital network of local resources, such as community organizations, that provide specific support to address HRSN (e.g., insurance navigation, transportation, SNAP benefit support).

Further, our clinical vocational liaison team are established and able to conduct standardized consultations and referrals to address vocational needs. We will used iterative co-design focus group sessions to refine our needs navigation model (AYA-NAV) to address these needs (Aim 1) and then, conduct a pilot randomized trial among 80 AYAs with financial toxicity or unmet HRSN, to evaluate the feasibility of AYA-NAV (Aim 2), and explore the preliminary impact of AYA-NAV delivered over 6 months on AYA financial and global health outcomes, compared to enhanced usual care (one-time referral to findhelp.org) (Aim 3). To achieve the aims of this study, we will use a mixed-methods approach and leverage our study team, expert advisors, and consultants representing AYAs, caregivers, clinicians, community partners, and human-centered design evaluation. This study is in alignment with the National Institute of Nursing Research’s strategic goals to improve health for all.

We have an outstanding team of experts with expertise in nursing science, medicine, AYA psychology and oncology, health outcome disparities, human-centered design, cancer care delivery, and mixed methods, and thus, we are uniquely positioned for success. Our line of research has the potential to ensure AYAs with cancer are able to access the care they need, ultimately improving quality of life and health outcomes for AYAs with cancer.

Grant Number: 1R21NR021310-01
NIH Institute/Center: NIH
Principal Investigator: Melissa Beauchemin