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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
Author(s) -
Rosenberg Abby R.,
Bona Kira,
Wharton Claire M.,
Bradford Miranda,
Shaffer Michele L.,
Wolfe Joanne,
Baker Kevin Scott
Publication year - 2016
Publication title -
pediatric blood and cancer
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.116
H-Index - 105
eISSN - 1545-5017
pISSN - 1545-5009
DOI - 10.1002/pbc.25843
Subject(s) - medicine , attrition , young adult , psychological resilience , qualitative research , family medicine , gerontology , pediatrics , psychology , social science , dentistry , sociology , psychotherapist
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.