Open AccessThe Creation of a Comprehensive Adolescent and Young Adult Cancer Survivorship Program: “Lost in Transition” No More
Author(s) -
Nadine Linendoll,
Rachel Murphy-Banks,
Erin Marie Barthel,
Lisa Bartucca,
Lauren Boehm,
Madison Welch,
Ruth Ann Weidner,
Susan K. Parsons
Publication year - 2021
Publication title -
journal of adolescent and young adult oncology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.743
H-Index - 20
eISSN - 2156-535X
pISSN - 2156-5333
DOI - 10.1089/jayao.2020.0024
Subject(s) - survivorship curve , medicine , psychosocial , cohort , cancer survivorship , cancer , family medicine , comorbidity , young adult , health care , gerontology , psychiatry , economics , economic growth
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.