Disparities in Quality Healthcare Among Childhood Cancer Survivors: Role of Medicaid

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PROJECT SUMMARY/ABSTRACT Survivors of childhood cancer require life-long healthcare to improve quality of life and health. However, the majority of adult survivors of childhood cancer, including those with public health insurance (primarily Medicaid), lack long-term healthcare. There are crucial gaps in our current understanding of disparities in patient care and the modifiable factors that create and perpetuate disparities in care among childhood cancer survivors in the Medicaid system. This study will use qualitative and survey research methods to systematically assess survivor experience of care in the Medicaid system and determine sources of disparities affecting care experience among adult survivors of childhood cancer. We anticipate contacting for potential recruitment a total of 2,700 adult survivors insured with Medicaid from the Childhood Cancer Survivor Study (CCSS), including: 20 survivors for qualitative survivor interviews (Aim 1), among whom 8 survivors will participate in a Delphi panel (Aim 2); 144 survivors for a pilot survey (Aim 2); and 2,536 survivors for an expanded survey (Aim 3). For Aim 1, we will also include 10 stakeholder participants (care providers and financial navigators) from CCSS participating institutions for qualitative stakeholder interviews. The specific aims are as follows. Aim 1: Use qualitative methods to explore multi-level barriers to quality healthcare for adult survivors of childhood cancer in the Medicaid system. Aim 2: Develop and validate a survey to quantify survivor experiences with the Medicaid system. Aim 3: Assess racial/ethnic, socioeconomic, rural-urban, and sex disparities in survivor experiences with insurance and healthcare in Medicaid, and how disparities are related to survivor-, community-, and state-level characteristics. The focus of this study aligns with the NIMHD’s research priority to understand and reduce health disparities by race/ethnicity, socioeconomic status, rurality, and sex. Data gained from this study will form the foundation for an R01 proposal to survey state-specific cancer survivor cohorts, with the goal of informing interventions that promote equitable, high-quality care based on state Medicaid program rules. The candidate’s long-term career goal is to become an independent scientist with a research program focused on addressing disparities in health and healthcare after childhood cancer. Under the mentorship of international experts in health disparities/minority health and cancer survivorship, the candidate will accomplish her short-term goals to 1) develop expertise in health disparities and implementation science, 2) acquire qualitative and survey research skills, 3) understand patient experience in pediatric oncology and cancer survivorship, and 4) improve research leadership and management skills to complete transition to independence. The integrated training plan includes a mix of didactic courses, hands-on learning activities, and focused multidisciplinary mentorship that will advance the candidate’s research skills and ensure her transition to a fully independent investigator.