Specialized Cancer Care for Adolescent and Young Adult Acute Lymphoblastic Leukemia: Barriers and Opportunities
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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.
Submitted September 29, 2024; final revision received November 22, 2024; accepted for publication December 9, 2024. Published online March 11, 2025.
Author contributions: Conceptualization: Muffly, Keegan, Parsons. Conducted interviews: Mui, Siden. Data analysis: Mui, Holdsworth. Writing—original draft: All authors. Writing—review & editing: All authors.
Disclosures: Dr. Muffly has disclosed receiving grant/research support from Adaptive and Kite Pharma; and serving as a scientific advisor for Kite Pharma, Autolus, and Pfizer. The remaining authors have disclosed that they have not received any financial consideration from any person or organization to support the preparation, analysis, results, or discussion of this article.
Funding: This work was supported by funding from Leukemia and Lymphoma Society (Equity in Access Award; L. Muffly, T.H.M. Keegan, H.M. Parsons).
Supplementary material: Supplementary material associated with this article is available online at https://doi.org/10.6004/jnccn.2024.7097. The supplementary material has been supplied by the author(s) and appears in its originally submitted form. It has not been edited or vetted by JNCCN. All contents and opinions are solely those of the author. Any comments or questions related to the supplementary materials should be directed to the corresponding author.
Supplementary Materials
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