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

J Adolesc Young Adult Oncol. 2021 Aug;10(4):397-403. doi: 10.1089/jayao.2020.0024. Epub 2020 Jul 8.


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.

Keywords: care continuum; health-related quality of life; late effects; survivorship.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Aged
  • Cancer Survivors*
  • Child
  • Cohort Studies
  • Humans
  • Neoplasms* / therapy
  • Survivors
  • Survivorship
  • Young Adult