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Preferences for cancer survivorship care among adolescents and young adults who experienced healthcare transitions and their parents.

Authors :
Psihogios, Alexandra M.
Schwartz, Lisa A.
Deatrick, Janet A.
Ver Hoeve, Elizabeth S.
Anderson, Lindsay M.
Wartman, Elicia C.
Szalda, Dava
Source :
Journal of Cancer Survivorship; Aug2019, Vol. 13 Issue 4, p620-631, 12p
Publication Year :
2019

Abstract

<bold>Purpose: </bold>This study aimed to elucidate experiences and preferences for survivorship care delivery among adolescent and young adult (AYA) childhood cancer survivors who experienced healthcare transitions.<bold>Methods: </bold>Eight focus groups were conducted with two groups of AYA survivors and their parents: (1) those who recently completed cancer treatment and are beginning follow-up care and (2) those who disengaged in follow-up care after the transition from pediatric to adult survivorship clinics. Interviewers used a structured interview guide that contained questions about perceptions and preferences for survivorship care models, resources, and tools (e.g., a survivorship care plan). We employed directed content analysis techniques to identify and organize relevant themes.<bold>Results: </bold>Results of this study support six primary themes for optimizing survivorship care models for AYA: (1) improve knowledge of late effects and need for LTFU; (2) provide supportive services that help to address fear and uncertainty about health; (3) adapt survivorship care to be consistent with AYA developmental factors; (4) increase support surrounding healthcare transitions; (5) improve survivorship care communication and coordination between patients and families, and between providers; and (6) incorporate digital health tools.<bold>Conclusions: </bold>These groups represent vulnerable patient populations in AYA survivorship care and their perspectives highlight potential clinical and research priorities for enhancing long-term care models.<bold>Implications For Cancer Survivors: </bold>Elucidating AYA and parent recommendations for survivorship care delivery can help to promote continuous engagement in care, target unmet needs, and promote health through survivorship models that are deemed acceptable to both patients and families. [ABSTRACT FROM AUTHOR]

Details

Language :
English
ISSN :
19322259
Volume :
13
Issue :
4
Database :
Complementary Index
Journal :
Journal of Cancer Survivorship
Publication Type :
Academic Journal
Accession number :
137870890
Full Text :
https://doi.org/10.1007/s11764-019-00781-x