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Open AccessArticle

Conducting Psychosocial Intervention Research among Adolescents and Young Adults with Cancer: Lessons from the PRISM Randomized Clinical Trial

1
Palliative Care and Resilience Lab, Seattle Children’s Research Institute, Seattle, WA 98101, USA
2
Department of Pediatrics, University of Washington School of Medicine, Seattle, WA 98105, USA
3
Department of Psychosocial Oncology and Palliative Care, Dana Farber Cancer Institute, Boston, MA 02101, USA
4
Department of Pediatrics, Boston Children’s Hospital, Boston, MA 02101, USA
*
Author to whom correspondence should be addressed.
Children 2019, 6(11), 117; https://doi.org/10.3390/children6110117
Received: 20 August 2019 / Revised: 3 October 2019 / Accepted: 9 October 2019 / Published: 24 October 2019
(This article belongs to the Special Issue Psychosocial Functioning in Childhood Cancer)
Background: Adolescents and young adults (AYAs) with cancer have poor psychosocial outcomes, in part because their limited participation in clinical trials precludes intervention-testing. We previously reported results of a successful randomized trial testing an AYA-targeted psychosocial intervention. Here, we aimed to describe strategies learned during the trial’s conduct. Methods: We summarized data from the medical record and staff field notes regarding reasons for participation/non-participation. We conducted two focus groups with study staff; directed content analyses identified strategies for success. Results: 92 AYAs enrolled (77% of approached; n = 50 Usual Care (control), n = 49 PRISM (intervention)). In eligible families who declined participation (n = 22 AYAs, n = 8 parents), the AYAs more commonly had advanced cancer (n = 11 (37%) declined vs. n = 25 (26%) enrolled). AYA reasons for non-enrollment were predominantly “not interested”; parents worried participation was “too burdensome.” Staff strategies for accrual included having significant time to introduce the study and underscoring a desire to learn from the patient. After enrollment, AYAs who discontinued participation were more commonly assigned to control (n = 5 (10%) control vs. n = 2 (4%) intervention). Only n = 1 AYA chose to discontinue participation after receiving the intervention. Conclusions: Efforts to engage AYAs prior to and during studies may help with accrual and retention. View Full-Text
Keywords: psychosocial; clinical trial; adolescent and young adult; cancer; palliative care psychosocial; clinical trial; adolescent and young adult; cancer; palliative care
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Rosenberg, A.R.; Junkins, C.C.; Sherr, N.; Scott, S.; Klein, V.; Barton, K.S.; Yi-Frazier, J.P. Conducting Psychosocial Intervention Research among Adolescents and Young Adults with Cancer: Lessons from the PRISM Randomized Clinical Trial. Children 2019, 6, 117.

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