Facilitators and barriers to Medicaid services for childhood cancer survivors: Perspectives from oncology providers and staff.

Abstract

e22009 Background: Stable insurance coverage is critical for childhood cancer survivors who require lifelong medical care to manage long-term health risks. Healthcare provider perspectives on the care experiences of Medicaid-insured childhood cancer survivors, an economically disadvantaged survivor population, remain understudied. Methods: We conducted semi-structured interviews with 22 healthcare providers or staff caring for adult survivors of childhood cancer, including oncologists, advanced practice providers or nurses, social workers, and financial counselors from Medicaid expansion and non-expansion states. Most participants were female (91%), aged 40-54 years (50%; range: 32–57; median: 51), and non-Hispanic White (73%), with 41% operating within both pediatric and adult care settings. Transcripts were analyzed using deductive and inductive thematic approaches. Results: From the provider or staff perspective, six themes regarding barriers to survivor care emerged: 1) many survivors forgo primary care, relying instead on survivorship clinics due to greater trust in oncology teams; 2) some survivors avoid primary care due to desire to move on from medical visits; 3) primary care providers often lack expertise or confidence in managing complex survivorship needs; 4) specialty care access is limited, as many specialists do not accept Medicaid, largely due to low reimbursement, expired contracts, and/or falling outside of managed care networks; 5) survivors face long wait times and appointment scheduling difficulties, especially in adult care settings where providers are less likely to accept new Medicaid patients; and 6) young adult survivors often struggle to navigate the adult healthcare system due to limited knowledge and support. Four themes were identified as survivor care facilitators: 1) dedicated support staff - e.g., social workers, navigators, transition coordinators – who connect survivors to the providers they need; 2) specialized transition clinics that bridge pediatric and adult care; 3) lists of Medicaid-accepting providers, which can improve referral and care continuity; and 4) integrated health systems that facilitate patient access when specialty and primary care are housed within cancer centers or affiliated networks. When asked for recommendations, providers and staff emphasized the need for policies that recognize the unique long-term care needs of childhood cancer survivors, streamline or expand Medicaid eligibility for this population, and advance toward universal coverage models. Conclusions: Oncology providers and staff described multifactorial, system-level barriers and facilitators shaping care for Medicaid-insured childhood cancer survivors. Findings underscore the need for policy reforms and enhanced care navigation/transition infrastructure to improve equitable access to primary and specialty services.