Racial Disparities in Financial Toxicity, Cost-Related Health Literacy, and Healthcare Transitions among Adolescent and Young Adult (AYA) Cancer Survivors in Kentucky

"Black adolescent and young adult (AYA) cancer survivors (diagnosed between 15 and 39 years of age) are at higher risk for experiencing financial toxicity and poorer health outcomes as they transition from pediatric/oncology care to adult/primary healthcare settings compared to their White counterparts. These poor healthcare transition (HCT) outcomes include later stage at diagnosis, undertreatment, and greater risk of death. The lack of evidence on factors that mitigate the impact of financial toxicity, such as costrelated or financial health literacy, on HCTs and related outcomes of Black AYA cancer survivors warrants further research. In light of recent health care reform changes that have resulted in high-deductible health insurance plans and mounting cancer costs, the need to advance research on programs that improve costrelated health literacy of cancer survivors is imperative. Improving cost-related health literacy of survivors influences their awareness of costs related to cancer care, and their ability to understand and appropriately use health insurance and other resources to manage costs, which in turn could improve cancer-related financial toxicity and HCT outcomes. The overall objective of this study is to examine racial disparities in financial toxicity, cost-related health literacy, and HCTs among AYA cancer survivors in Kentucky. To support these goals, this application will address the following aims:
Aim 1: Identify disparities in financial toxicity, cost-related health literacy, and HCTs between Black and White AYA cancer survivors in Kentucky. Hypothesis 1. Black AYA cancer survivors will be more likely to experience high financial toxicity, have lower cost-related health literacy and have poorer HCTs and related outcomes compared to their White counterparts.
Aim 2: Assess the relationship between financial toxicity, cost-related health literacy, and HCTs
among Black and White AYA cancer survivors in Kentucky. Hypothesis 2. Black and White AYA
cancer survivors with high financial toxicity and low cost-related health literacy will be more likely to have poorer HCTs and related outcomes.
Aim 3: Examine barriers and facilitators to successful HCTs among Black and White AYA cancer
survivors in Kentucky. Hypothesis 3: Experiences of financial toxicity and limited understanding of healthcare finances and health insurance will serve as highly cited barriers to successful HCTs.
To meet these aims, a cross-sectional, mixed methods, concurrent triangulation design guided by the Social-ecological Model of AYA Readiness for Transition (SMART) will be used. In Aims 1 and 2, surveys will be collected from 180-200 Black and White AYA cancer survivors in Kentucky in collaboration with the Kentucky Cancer Registry (KCR). Survey data will be analyzed using descriptive analysis, bivariate comparisons, and multiple linear regression to evaluate predictors of the success of HCT. In Aim 3, 20 key informant interviews will be conducted with patients and survivors at the Kentucky Children’s Hospital’s (KCH) DanceBlue pediatric oncology clinic. Interview data will be analyzed using descriptive coding, content analysis, and thematic qualitative data analysis techniques.
Findings from this study will help establish the relationship between financial toxicity, cost-related health literacy and HCT outcomes among AYA cancer survivors to help support clinical practice and future research. It will also provide opportunities to strengthen research collaborations between the PI and coinvestigator, John D’Orazio, MD, PhD who is a basic scientist and chief of KCH’s DanceBlue pediatric hematology/oncology clinic where future interventions based on this pilot study will be implemented. This study will also strengthen research collaborations with Dr. Kimberly Northrip, MD, MPH, the KCR, and Markey Cancer Center’s (MCC) Patient Oriented and Population (POP) Sciences- Shared Resource
Facility (SRF). These partnerships will support the future submission of a robust NIH R01 application in response to NCI’s NOSI (NOT-HD-21-027) aimed at developing a tailored transition intervention to facilitate successful HCTs for AYAs from pediatric to adult healthcare and improve clinical, economic/financial and healthcare service-related outcomes."