Are NCI Cancer Centers Providing Adolescents and Young Adults With Cancer Focused Clinical Services? A National Survey

Authors:
Katherine Daunov Case Western Reserve University, Cleveland, Ohio
University Hospitals Cleveland Medical Center, Cleveland, Ohio

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Michael Daunov Case Western Reserve University, Cleveland, Ohio
University Hospitals Cleveland Medical Center, Cleveland, Ohio

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Kara Noskoff Children’s Hospital of Orange County, Orange, California

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Hilary Gan Teen Cancer America, Los Angeles, California

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Simon Davies Teen Cancer America, Los Angeles, California

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Megan Farrell Case Western Reserve University, Cleveland, Ohio

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Whitney Hadley University Hospitals Cleveland Medical Center, Cleveland, Ohio
Angie Fowler AYA Cancer Institute, UH Rainbow Babies & Children’s Hospital, Cleveland, Ohio
Now with The Gathering Place, Beachwood and Westlake, Ohio

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Amelia Baffa University Hospitals Cleveland Medical Center, Cleveland, Ohio
Angie Fowler AYA Cancer Institute, UH Rainbow Babies & Children’s Hospital, Cleveland, Ohio

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Jennifer Giesel Case Western Reserve University, Cleveland, Ohio
University Hospitals Cleveland Medical Center, Cleveland, Ohio
Angie Fowler AYA Cancer Institute, UH Rainbow Babies & Children’s Hospital, Cleveland, Ohio
Now with LifeStance Health, Beachwood, Ohio

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Rachel Egler Case Western Reserve University, Cleveland, Ohio
University Hospitals Cleveland Medical Center, Cleveland, Ohio
Angie Fowler AYA Cancer Institute, UH Rainbow Babies & Children’s Hospital, Cleveland, Ohio

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Alex Y. Huang Case Western Reserve University, Cleveland, Ohio
University Hospitals Cleveland Medical Center, Cleveland, Ohio
Angie Fowler AYA Cancer Institute, UH Rainbow Babies & Children’s Hospital, Cleveland, Ohio

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John J. Letterio Case Western Reserve University, Cleveland, Ohio
University Hospitals Cleveland Medical Center, Cleveland, Ohio
Angie Fowler AYA Cancer Institute, UH Rainbow Babies & Children’s Hospital, Cleveland, Ohio

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Richard T. Lee Case Western Reserve University, Cleveland, Ohio
City of Hope Cancer Center, Duarte, California

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Volume/Issue:
Volume 21: Issue 5
Online Publication Date:
May 2023
DOI:
https://doi.org/10.6004/jnccn.2023.7001
Restricted access

Background: This study sought to evaluate the current services and delivery models of adolescent and young adult oncology (AYAO)–specific programs at NCI-designated Cancer Centers (NCI-CCs). Patients and Methods: NCI, academic, and community cancer centers were electronically sent surveys from October to December 2020 and administered via REDCap. Results: Survey responses were received from 50 of 64 (78%) NCI-CCs, primarily completed by pediatric oncologists (53%), adult oncologists (11%), and social workers (11%). Half (51%) reported an existing AYAO program, with most (66%) started within the past 5 years. Although most programs combined medical and pediatric oncology (59%), 24% were embedded within pediatrics alone. Most programs saw patients aged 15 (55%) to 39 years (66%) mainly via outpatient clinic consultation (93%). Most centers reported access to a range of medical oncology and supportive services, but dedicated services specifically for adolescent and young adults (AYAs) were available at a much lower extent, such as social work (98% vs 58%) and psychology (95% vs 54%). Although fertility preservation was offered by all programs (100%), only two-thirds of NCI centers (64%) reported providing sexual health services to AYAs. Most NCI-CCs (98%) were affiliated with a research consortium, and a lesser extent (73%) reported collaboration between adult and pediatric researchers. Nearly two-thirds (60%) reported that AYA oncology care was important/very important to their respective institution and reported providing good/excellent care to AYAs with cancer (59%), but to a lesser extent reported good/excellent research (36%), sexual health (23%), and education of staff (21%). Conclusions: Results of this first-ever national survey to assess AYAO programs showed that only half of NCI-CCs report having a dedicated AYAO program, and that areas of improvement include staff education, research, and sexual health services for patients.

Submitted August 22, 2022; final revision received January 4, 2023; accepted for publication January 4, 2023.

Author contributions: Conceptualization: K. Daunov, Noskoff, Gan, Lee. Data curation: K. Daunov, M. Daunov, Farrell. Formal analysis: K. Daunov, Farrell, Lee. Investigation: K. Daunov, Noskoff, Gan, Lee. Methodology: K. Daunov, Noskoff, Gan, Lee. Project administration: K. Daunov, Farrell, Lee. Supervision: Davies, Lee. Visualization: K. Daunov, M. Daunov, Noskoff, Gan, Lee. Writing—original draft: K. Daunov, M. Daunov, Writing—review and editing: All authors.

Disclosures: The authors have disclosed that they have not received any financial considerations from any person or organization to support the preparation, analysis, results, or discussion of this article.

Correspondence: Katherine Daunov, MSN, University Hospitals Cleveland Medical Center, 11000 Euclid Avenue Cleveland, OH 44106. Email: Katherine.Daunov@uhhospitals.org

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Print ISSN:
1540-1405
Online ISSN:
1540-1413
Publisher:
National Comprehensive Cancer Network
Cover Journal of the National Comprehensive Cancer Network
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Copyright:
Copyright © 2023 by the National Comprehensive Cancer Network 2023
Article Category:
Research Article
Received:
22 Aug 2022
Accepted:
04 Jan 2023
Print Publication Date:
01 May 2023
Online Publication Date:
May 2023
Keywords:
Adolescent and Young Adult Oncology; Care Delivery; National Cancer Institute Cancer Centers; Provider Survey

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