Characteristics of Health Care Settings Where Adolescents and Young Adults Receive Care for ALL

Julie A. Wolfson, Allison C. Grimes, Michelle Nuno, Charlotte L. Kerber, Subhash Ramakrishnan, Melissa Beauchemin, David Dickens, Jennifer M. Levine, Michael E. Roth, Michele Scialla, Wendy Woods, Sarah Vargas, Koh B. Boayue, George J. Chang, Wendy Stock, Dawn Hershman, Emily Curran, Anjali Advani, Kristen O'Dwyer, Selina LugerJane Jijun Liu, David R. Freyer, Lillian Sung, Susan K. Parsons

Research output: Contribution to journalArticlepeer-review

1 Scopus citations

Abstract

PURPOSEIndividuals diagnosed with cancer between 15 and 39 years (adolescent and young adult [AYA]) face unique vulnerability. Detail is lacking about care delivery for these patients, especially those with ALL. We address these knowledge gaps by describing AYA ALL care delivery details at National Cancer Institute Community Oncology Research Program (NCORP) (sub)affiliates by model of care.METHODSParticipating institutions treated at least one AYA with ALL from 2012 to 2016. Study-specific criteria were used to determine the number of unique clinical facilities (CFs) per NCORP and their model of care (adult/internal medicine [IM], pediatric, mixed [both]). Surveys completed by NCORPs for each CF by model of care captured size, resources, services, and communication.RESULTSAmong 84 participating CFs (adult/IM, n=47; pediatric, n=15; mixed, n=24), 34% treated 5-10 AYAs with ALL annually; adult/IM CFs more often treated <5 (adult/IM, 60%; pediatric, 40%; mixed, 29%). Referral decisions were commonly driven by an age/diagnosis combination (58%), with frequent ALL-specific age minimums (87%) or maximums (80%). Medical, navigational, and social work services were similar across models while psychology was available at more pediatric CFs (pediatric, 80%; adult/IM, 40%; mixed, 46%-54%). More pediatric or mixed CFs reported oncologists interacting with pediatric/adult counterparts via tumor boards (pediatric, 93%; adult/IM, 26%; mixed, 96%) or initiating contact (pediatric, 100%; adult/IM, 77%; mixed 96%); more pediatric CFs reported an affiliated counterpart (pediatric, 53%; adult, 19%). Most CFs reported no AYA-specific resources (79%) or meetings (83%-98%).CONCLUSIONSystem-level aspects of AYA ALL care delivery have not been examined previously. At NCORPs, these characteristics differ by models of care. Additional work is ongoing to investigate the impact of these facility-level factors on guideline-concordant care in this population. Together, these findings can inform a system-level intervention for diverse practice settings.

Original languageEnglish (US)
Pages (from-to)491-502
Number of pages12
JournalJCO Oncology Practice
Volume20
Issue number4
DOIs
StatePublished - Apr 1 2024

ASJC Scopus subject areas

  • Oncology
  • Health Policy
  • Oncology(nursing)

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