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

Author:

Wolfson Julie A.12ORCID,Grimes Allison C.3,Nuno Michelle45ORCID,Kerber Charlotte L.6ORCID,Ramakrishnan Subhash4,Beauchemin Melissa7ORCID,Dickens David8ORCID,Levine Jennifer M.9ORCID,Roth Michael E.10ORCID,Scialla Michele11ORCID,Woods Wendy12ORCID,Vargas Sarah4,Boayue Koh B.13,Chang George J.1415ORCID,Stock Wendy1617ORCID,Hershman Dawn1819ORCID,Curran Emily2021,Advani Anjali2223ORCID,O'Dwyer Kristen2224ORCID,Luger Selina2526ORCID,Liu Jane Jijun2728,Freyer David R.29ORCID,Sung Lillian30ORCID,Parsons Susan K.31ORCID

Affiliation:

1. Division of Pediatric Hematology-Oncology, University of Alabama at Birmingham, Birmingham, AL

2. Institute for Cancer Outcomes and Survivorship, University of Alabama at Birmingham, Birmingham, AL

3. Division of Pediatric Hematology-Oncology, University of Texas Health Science Center San Antonio, San Antonio, TX

4. Children's Oncology Group, Arcadia, CA

5. Department of Population and Public Health Sciences, University of Southern California, Los Angeles, CA

6. Department of Public Health Sciences, University of California, Davis, CA

7. School of Nursing, Columbia University Irving Medical Center, New York, NY

8. Division of Pediatric Hematology-Oncology, University of Iowa, Iowa City, IA

9. Center for Cancer and Blood Disorders, Children's National Medical Center, Washington, DC

10. Division of Pediatric Hematology-Oncology, MD Anderson Cancer Center, Houston, TX

11. Division of Pediatric Hematology-Oncology, Nemours, Wilmington, DE

12. Division of Pediatric Hematology-Oncology, Blank Children's Hospital, Des Moines, IA

13. Division of Pediatric Hematology-Oncology, University of New Mexico Cancer Center, Albuquerque, NM

14. Alliance Cancer Care Delivery Research, Houston, TX

15. Department of Colon and Rectal Surgery and Department of Health Services Research, MD Anderson Cancer Center, The University of Texas, Houston, TX

16. Alliance Leukemia, Chicago, IL

17. Division of Hematology-Oncology, University of Chicago, Chicago, IL

18. SWOG Cancer Care Delivery Research, Portland, OR

19. Division of Hematology-Oncology, Columbia University, New York, NY

20. Alliance Leukemia, Cincinnati, OH

21. Division of Hematology-Oncology, University of Cincinnati, Cincinnati, OH

22. SWOG Leukemia, Portland, OR

23. Division of Hematologic Oncology and Blood Disorders, Cleveland Clinic, Taussig Cancer Institute, Cleveland, OH

24. Division of Hematology-Oncology, Wilmot Cancer Institute, University of Rochester, Rochester, NY

25. ECOG-ACRIN Leukemia, Boston, MA

26. Division of Hematology-Oncology, University of Pennsylvania, Philadelphia, PA

27. Alliance Community Oncology, Chicago, IL

28. Heartland NCORP, Division of Hematology-Oncology, Illinois CancerCare, Peoria, IL

29. Division of Pediatric Hematology-Oncology, Children's Hospital Los Angeles, Los Angeles, CA

30. Division of Pediatric Hematology-Oncology, The Hospital for Sick Children, Toronto, ON (Canada)

31. Division of Hematology/Oncology and Institute for Clinical Research and Health Policy Studies, Tufts Medical Center, Boston, MA

Abstract

PURPOSE Individuals 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. METHODS Participating 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. RESULTS Among 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%). CONCLUSION System-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.

Publisher

American Society of Clinical Oncology (ASCO)

Subject

Oncology (nursing),Health Policy,Oncology

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