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.