Identifying metrics of success for transitional care practices in childhood cancer survivorship: A qualitative interview study of survivors

Karim Thomas Sadak, Milki T. Gemeda, Michelle Grafelman, Joseph P. Neglia, David R. Freyer, Eileen Harwood, Jude Mikal

Research output: Contribution to journalArticlepeer-review

Abstract

Background: Adolescent and young adult (AYA) childhood cancer survivors (CCS) should be empowered to continue their survivor-focused care as they transition into adult medicine. However, the majority of AYA-aged survivors become lost to follow up around the age of typical transition to adulthood. The purpose of this study was to identify, from the patient's perspective, key factors that facilitate successful transitions to adult-centered survivorship care. Methods: A qualitative study was conducted with AYA CCS (n = 29) from the survivorship clinic of a single institution as key informants. Data were collected through a series of structured phone interviews and subjected to thematic content analysis. Results: Four major themes with multiple subthemes were identified: (1) transition practices need to be flexible and individually tailored; (2) effective communication is critical to a successful transition; (3) continuity in providers is needed during the transition; and (4) comprehensive care means care that also addresses psycho-social well-being. Conclusions: From the perspective of AYA CCS, the ideal model of transitional survivorship care could include a patient navigator who promotes provider flexibility, consistent communication, and pro-active comprehensive care that encompasses both medical and psycho-social well-being. Models of care for CCS should be built to provide, or seamlessly facilitate, continuous survivor-focused care across the age continuum. A longitudinal relationship with a survivor-focused provider can help promote the values that CCS' report as important in transitioning care from pediatric- to adult-centered care.

Original languageEnglish (US)
Article number898
JournalBMC Cancer
Volume20
Issue number1
DOIs
StatePublished - Sep 21 2020

Bibliographical note

Funding Information:
CureSearch and University of Minnesota Department of Pediatrics had no role in the design of the study and collection, analysis, and interpretation of data and no role in writing the manuscript.

Publisher Copyright:
© 2020 The Author(s).

Copyright:
Copyright 2020 Elsevier B.V., All rights reserved.

Keywords

  • Childhood cancer survivor transition qualitative

PubMed: MeSH publication types

  • Journal Article

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