{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,18]],"date-time":"2026-08-18T05:52:55Z","timestamp":1787032375734,"version":"build-2736575974"},"reference-count":38,"publisher":"Harborside Press, LLC","issue":"4","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2025,4]]},"abstract":"<jats:p>\n                    <jats:bold>Background:<\/jats:bold>\n                    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\u2019s 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.\n                    <jats:bold>Methods:<\/jats:bold>\n                    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.\n                    <jats:bold>Results:<\/jats:bold>\n                    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.\n                    <jats:bold>Conclusions:<\/jats:bold>\n                    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.\n                  <\/jats:p>","DOI":"10.6004\/jnccn.2024.7097","type":"journal-article","created":{"date-parts":[[2025,3,11]],"date-time":"2025-03-11T13:20:11Z","timestamp":1741699211000},"source":"Crossref","is-referenced-by-count":1,"title":["Specialized Cancer Care for Adolescent and Young Adult Acute Lymphoblastic Leukemia: Barriers and Opportunities"],"prefix":"10.6004","volume":"23","author":[{"given":"Lori","family":"Muffly","sequence":"first","affiliation":[{"name":"Division of Blood and Marrow Transplantation and Cellular Therapy, Department of Medicine, Stanford University, Stanford, CA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Theresa H.M.","family":"Keegan","sequence":"additional","affiliation":[{"name":"Division of Hematology\/Oncology, University of California Davis, Davis, CA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Heather Z.","family":"Mui","sequence":"additional","affiliation":[{"name":"Division of Primary Care and Population Health, Department of Medicine, Stanford University, Stanford, CA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elysia M.","family":"Alvarez","sequence":"additional","affiliation":[{"name":"Division of Pediatric Hematology\/Oncology, University of California Davis, Davis, CA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rachel","family":"Siden","sequence":"additional","affiliation":[{"name":"Division of Primary Care and Population Health, Department of Medicine, Stanford University, Stanford, CA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Laura M.","family":"Holdsworth","sequence":"additional","affiliation":[{"name":"Division of Primary Care and Population Health, Department of Medicine, Stanford University, Stanford, CA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Helen M.","family":"Parsons","sequence":"additional","affiliation":[{"name":"Division of Health Policy and Management, University of Minnesota School of Public Health, Minneapolis, MN"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"4047","reference":[{"key":"B1","unstructured":"National Cancer Institute Surveillance Epidemiology and End Results Program. Cancer stat facts: leukemia \u2013 acute lymphocytic leukemia (ALL). Accessed January 14, 2023. Available at: https:\/\/seer.cancer.gov\/statfacts\/html\/alyl.html"},{"key":"B2","series-title":"J Oncol Pract","first-page":"235","article-title":"Overview of adolescent and young adult oncology","volume":"15","author":"Coccia PF","year":"2019","unstructured":"Coccia PF. Overview of adolescent and young adult oncology. J Oncol Pract 2019;15:235\u2013237."},{"key":"B3","series-title":"CA Cancer J Clin","first-page":"443","article-title":"Cancer statistics for adolescents and young adults, 2020","volume":"70","author":"Miller KD","year":"2020","unstructured":"Miller KD, Fidler-Benaoudia M, Keegan TH,  Cancer statistics for adolescents and young adults, 2020. CA Cancer J Clin 2020;70:443\u2013459."},{"key":"B4","series-title":"J Natl Compr Canc Netw","first-page":"881","article-title":"Understanding causes of inferior outcomes in adolescents and young adults with cancer","volume":"21","author":"Wolfson JA","year":"2023","unstructured":"Wolfson JA, Kenzik KM, Foxworthy B,  Understanding causes of inferior outcomes in adolescents and young adults with cancer. J Natl Compr Canc Netw 2023;21:881\u2013888."},{"key":"B5","series-title":"JCO Oncol Pract","first-page":"1190","article-title":"Impact of specialized treatment setting on survival in adolescent and young adult ALL","volume":"19","author":"Muffly LS","year":"2023","unstructured":"Muffly LS, Parsons HM, Miller K,  Impact of specialized treatment setting on survival in adolescent and young adult ALL. JCO Oncol Pract 2023;19:1190\u20131198."},{"key":"B6","series-title":"JNCI Cancer Spectr","first-page":"pkae046","article-title":"Travel-time barriers to specialized cancer care for adolescents and young adults with acute lymphoblastic leukemia","volume":"8","author":"Parsons HM","year":"2024","unstructured":"Parsons HM, Muffly LS, Garcia A,  Travel-time barriers to specialized cancer care for adolescents and young adults with acute lymphoblastic leukemia. JNCI Cancer Spectr 2024;8:pkae046."},{"key":"B7","article-title":"NCCN Clinical Practice Guidelines in Oncology: Acute Lymphoblastic Leukemia. Version 1.2022","author":"Shah B","unstructured":"Shah B, Abboud R, Advani A,  NCCN Clinical Practice Guidelines in Oncology: Acute Lymphoblastic Leukemia. Version 1.2022. Accessed January 2, 2023. 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