Research Article
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Published Online: 11 August 2021

The Creation of a Comprehensive Adolescent and Young Adult Cancer Survivorship Program: “Lost in Transition” No More

Publication: Journal of Adolescent and Young Adult Oncology
Volume 10, Issue Number 4

Abstract

Purpose: The Reid R. Sacco AYA Cancer Program set out to improve survivorship care for AYA-aged patients (15–39 years) of pediatric or AYA cancer. This article discusses the steps in establishing the clinic, including the creation of a database on cancer history, exposures, and attendant risks of late effects. Results from the database tell the broader story of AYAs who seek care within a dedicated survivorship clinic.
Methods: The database was created with REDCap® (Research Electronic Data Capture), a secure web-based, HIPAA compliant application for research and clinical study data. Data were abstracted and analyzed by trained members of the program team.
Results: A total of 144 patients were seen for their initial survivorship visit between January 2013 and September 2019. Regarding physical health, two-thirds of the patients presented with an established late effect, one third with an established medical comorbidity, and 11% (n = 16) with secondary cancer related to their oncologic treatment. In assessing mental health, a significant cohort reported a known affective disorder (32%, n = 46) with one quarter already taking a psychotropic medication. Despite the transient nature of AYAs, 85% of patients remained in care within the long-term follow-up clinical model.
Conclusions: Data presented illustrate how multilayered and complex survivorship care needs can be, as patients enter the clinic with complicated pre-existing psychosocial issues, significant late effects, and comorbidities. This study reinforces the value of a clinical database to better understand AYA survivors with the ultimate goal of optimizing and coordinating care.

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cover image Journal of Adolescent and Young Adult Oncology
Journal of Adolescent and Young Adult Oncology
Volume 10Issue Number 4August 2021
Pages: 397 - 403
PubMed: 32640864

History

Published online: 11 August 2021
Published in print: August 2021
Published ahead of print: 8 July 2020

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Nadine Linendoll, PhD, MDiv, GNP
Reid R. Sacco Adolescent and Young Adult Cancer Program, Tufts Medical Center, Boston, Massachusetts, USA.
Division of Hematology/Oncology, Tufts Medical Center Cancer Center, Boston, Massachusetts, USA.
Institute for Clinical Research and Health Policy Studies, Tufts Medical Center, Boston, Massachusetts, USA.
Rachel Murphy-Banks, MA
Reid R. Sacco Adolescent and Young Adult Cancer Program, Tufts Medical Center, Boston, Massachusetts, USA.
Institute for Clinical Research and Health Policy Studies, Tufts Medical Center, Boston, Massachusetts, USA.
Erin Barthel, MD*
Reid R. Sacco Adolescent and Young Adult Cancer Program, Tufts Medical Center, Boston, Massachusetts, USA.
Lisa Bartucca, MD
Reid R. Sacco Adolescent and Young Adult Cancer Program, Tufts Medical Center, Boston, Massachusetts, USA.
Lauren Boehm, MD
Reid R. Sacco Adolescent and Young Adult Cancer Program, Tufts Medical Center, Boston, Massachusetts, USA.
Madison Welch, BS
Reid R. Sacco Adolescent and Young Adult Cancer Program, Tufts Medical Center, Boston, Massachusetts, USA.
Ruth Ann Weidner, MBA, MRP
Institute for Clinical Research and Health Policy Studies, Tufts Medical Center, Boston, Massachusetts, USA.
Susan K. Parsons, MD, MRP [email protected]
Reid R. Sacco Adolescent and Young Adult Cancer Program, Tufts Medical Center, Boston, Massachusetts, USA.
Division of Hematology/Oncology, Tufts Medical Center Cancer Center, Boston, Massachusetts, USA.
Institute for Clinical Research and Health Policy Studies, Tufts Medical Center, Boston, Massachusetts, USA.

Notes

*
Current affiliation: Seattle Children's Hospital, Seattle, Washington, USA.
Current affiliation: New York Presbyterian Komansky Children's Hospital Weill Cornell Medical Center, New York, New York, USA.
Current affiliation: Maine Medical Center, Portland, Maine, USA.
Address correspondence to: Susan Parsons, MD, MRP, Reid R. Sacco Adolescent and Young Adult Cancer Program, Tufts Medical Center, 800 Washington Street, #345, Boston, MA 02111, USA [email protected]

Author Disclosure Statement

No competing financial interests exist.

Funding Information

This study was partially funded by the Reid R. Sacco AYA Cancer Alliance. This project was also supported, in part, by the National Center for Advancing Translational Sciences, National Institutes of Health, award number UL1TR002544. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.

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