Identifying metrics of success for transitional care practices in childhood cancer survivorship: a qualitative interview
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RESEARCH ARTICLE
Open Access
Identifying metrics of success for transitional care practices in childhood cancer survivorship: a qualitative interview study of survivors Karim Thomas Sadak1,2* , Milki T. Gemeda3, Michelle Grafelman2, Joseph P. Neglia1,2, David R. Freyer4,5, Eileen Harwood6 and Jude Mikal7
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 wellbeing. 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. Keywords: Childhood cancer survivor transition qualitative
* Correspondence: [email protected] 1 University of Minnesota Masonic Children’s Hospital, University of Minnesota Masonic Cancer Center, 420 Delaware St. SE - Mayo MMC 484, Minneapolis, MN 55455, USA 2 University of Minnesota Medical School, 420 Delaware St. SE - Mayo MMC 484, Minneapolis, MN 55455, USA Full list of author information is available at the end of the article © The Author(s). 2020 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is no
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