Specialized Cancer Care for Adolescent and Young Adult Acute Lymphoblastic Leukemia: Barriers and Opportunities

Background: Research has demonstrated that survival of adolescents and young adults (AYA) with acute lymphoblastic leukemia (ALL) is superior following treatment at specialized cancer centers (SCCs), such as NCI-designated Cancer Centers or Children’s Oncology Group sites. However, a minority of newly diagnosed AYAs with ALL receive care at SCCs. We conducted a qualitative study to better understand provider and policy expert perspectives on this discrepancy and to identify barriers and potential solutions to improving access to SCCs for AYAs with ALL. Methods: We performed in-depth, semistructured interviews with pediatric and adult hematology/oncology clinicians and policy experts across the United States. Interviews were recorded, transcribed, and uploaded into NVivo for analysis. We used the Expanded Chronic Care Model as a conceptual framework for analysis and interpretation. Results: We interviewed 16 clinicians and policy experts (56% health policy experts, 75% male, 75% White) from 8 states. Thematic analysis identified organizational infrastructure, institutional expertise, and ALL clinician specialization as potential contributors to improved outcomes at SCCs. Barriers to receiving care at SCCs included incompatible health insurance, transportation/lodging costs, patient preference, limited health literacy, and variable provider knowledge. Suggested solutions for improving access and outcomes included developing AYA-focused legislative policies, strengthening ALL clinical guidelines, expanding health care delivery models and partnerships, educating and empowering patient advocacy groups, and enhancing self-advocacy and care management skills. Conclusions: This study highlights barriers associated with low rates of treatment at SCCs and identifies opportunities for intervention to improve access and outcomes for AYAs with ALL.