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Pediatr Blood Cancer. 2016 Apr;63(4):734-6. doi: 10.1002/pbc.25843. Epub 2015 Dec 18.

Adolescent and Young Adult Patient Engagement and Participation in Survey-Based Research: A Report From the "Resilience in Adolescents and Young Adults With Cancer" Study.

Rosenberg AR1,2,3,4, Bona K5,6,7, Wharton CM1,2, Bradford M2, Shaffer ML2,4, Wolfe J5,7,8, Baker KS1,2,4,9.

Author information

1
Seattle Children's Hospital, Cancer and Blood Disorders Center, Seattle, Washington.
2
Seattle Children's Research Institute, Center for Clinical and Translational Research, Seattle, Washington.
3
Seattle Children's Hospital, Treuman Katz Center for Pediatric Bioethics, Seattle, Washington.
4
Department of Pediatrics, University of Washington, Seattle, Washington.
5
Department of Medicine, Boston Children's Hospital, Boston, Massachusetts.
6
Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts.
7
Department of Pediatric Hematology/Oncology, Harvard Medical School, Boston, Massachusetts.
8
Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Seattle, Washington.
9
Clinical Research Division, Fred Hutchinson Cancer Research Center, Seattle, Washington.

Abstract

Conducting patient-reported outcomes research with adolescents and young adults (AYAs) is difficult due to low participation rates and high attrition. Forty-seven AYAs with newly diagnosed cancer at two large hospitals were prospectively surveyed at the time of diagnosis and 3-6 and 12-18 months later. A subset participated in 1:1 semistructured interviews. Attrition prompted early study closure at one site. The majority of patients preferred paper-pencil to online surveys. Interview participants were more likely to complete surveys (e.g., 93% vs. 58% completion of 3-6 month surveys, P = 0.02). Engaging patients through qualitative methodologies and using patient-preferred instruments may optimize future research success.

KEYWORDS:

Adolescent and Young Adult Oncology (AYA); health-services research; patient-reported outcomes; pediatric cancer

PMID:
26681427
PMCID:
PMC4755794
DOI:
10.1002/pbc.25843
[Indexed for MEDLINE]
Free PMC Article

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