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
Open accessAbstract
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.
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Allowing personal narrative sharing is linked to AYA participation in clinical research.
“this is another variable associated with AYA engagement in clinical research.39”
From Promoting resilience in adolescents and young adults with cancer: Results from the PRISM randomized controlled trial (2018) · cites this paper as [39]
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- Authors
- Rosenberg, A. R., Bona, K., Wharton, C. M., Bradford, M., Shaffer, M. L., Wolfe, J., & Baker, K. S.
- Affiliations
- Seattle Children's Hospital (US)
- Boston Children's Hospital (US)
- Seattle Children's Research Institute (US)
- University of Washington (US)
- Corresponding author
- Rosenberg, Abby R.
- ORCID
- Venue
- Pediatric Blood & Cancer
- Publisher
- Wiley
- Published
- 2015-12-18
- Volume
- 63
- Issue
- 4
- Pages
- 734-736
- ISSN
- 1545-5009 (ISSN-L)
- 1545-5017
- PMC
- PMC4755794
- OpenAlex
- W2214055178
- Cited by
- 36
- References
- 13
- Citations by year
- 2026: 1 · 2025: 1 · 2023: 2 · 2022: 3 · 2021: 1 · 2019: 8 · 2018: 6 · 2017: 6 · 2016: 8
- FWCI
- 6.64
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Pediatric Blood & Cancer (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Institutes of Health (KL2TR000421, KL2TR002317)
- National Cancer Institute (L40 CA170049)
- National Center for Advancing Translational Sciences
- Topics
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Childhood Cancer Survivors' Quality of Life
- Social Sciences › Sociology and Political Science › Survey Methodology and Nonresponse
- Social Sciences › Sociology and Political Science › Children's Rights and Participation
- Keywords
- adolescents and young adults, cancer, patient engagement, patient-reported outcomes, survey attrition, survey completion, patient preferences, resilience, newly diagnosed cancer, research participation
- MeSH terms
- Adolescent, Adult, Female, Health Services Research, Humans, Male, Neoplasms, Patient Participation, Surveys and Questionnaires, Research Design, Young Adult
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