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

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 lat...

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Veröffentlicht in:Pediatric blood & cancer 2016-04, Vol.63 (4), p.734-736
Hauptverfasser: Rosenberg, Abby R., Bona, Kira, Wharton, Claire M., Bradford, Miranda, Shaffer, Michele L., Wolfe, Joanne, Baker, Kevin Scott
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container_end_page 736
container_issue 4
container_start_page 734
container_title Pediatric blood & cancer
container_volume 63
creator Rosenberg, Abby R.
Bona, Kira
Wharton, Claire M.
Bradford, Miranda
Shaffer, Michele L.
Wolfe, Joanne
Baker, Kevin Scott
description 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.
doi_str_mv 10.1002/pbc.25843
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subjects Adolescent
Adolescent and Young Adult Oncology (AYA)
Adult
Female
Health Services Research
Hematology
Humans
Male
Neoplasms
Oncology
Patient Participation - methods
patient-reported outcomes
pediatric cancer
Pediatrics
Research Design
Surveys and Questionnaires
Teenagers
Young Adult
Young adults
title 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
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