Abstract
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.
Highlights
Adolescents and Young Adults (AYAs) with cancer have disproportionately poor physical and psychosocial outcomes compared to younger pediatric and older adult counterparts [1,2]
Children 2019, 6, 117 factors and limited access to trials, as well as philosophical, including AYA trust in research processes, practical considerations for participation, and perceptions of trial acceptability [9,10,11,12,13]. These barriers are important when it comes to psychosocial intervention research, where even fewer AYAs participate compared to pharmacology-based research [11]
We found that AYAs who received Promoting Resilience in Stress Management (PRISM) reported higher resilience, hope, benefit finding, and cancer-related quality of life, and lower psychological distress
Summary
Adolescents and Young Adults (AYAs) with cancer have disproportionately poor physical and psychosocial outcomes compared to younger pediatric and older adult counterparts [1,2] Reasons for these poor outcomes include differences in cancer biology, the contribution of developmental life-challenges to the burden of cancer, and a lack of AYA participation in clinical trials [3]. Children 2019, 6, 117 factors and limited access to trials, as well as philosophical, including AYA trust in research processes, practical considerations for participation, and perceptions of trial acceptability [9,10,11,12,13] These barriers are important when it comes to psychosocial intervention research, where even fewer AYAs participate compared to pharmacology-based research [11]. We aimed to describe strategies learned during the trial’s conduct
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