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.
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.
authors.affiliation: Seattle Children's Hospital, Cancer and Blood Disorders Center, Seattle, Washington.|Seattle Children's Research Institute, Center for Clinical and Translational Research, Seattle, Washington.|Seattle Children's Hospital, Treuman Katz Center for Pediatric Bioethics, Seattle, Washington.|Department of Pediatrics, University of Washington, Seattle, Washington.
authors.forename: Abby R
authors.initials: AR
authors.lastname: Rosenberg
authors.affiliation: Department of Medicine, Boston Children's Hospital, Boston, Massachusetts.|Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts.|Department of Pediatric Hematology/Oncology, Harvard Medical School, Boston, Massachusetts.
authors.forename: Kira
authors.initials: K
authors.lastname: Bona
authors.affiliation: Seattle Children's Hospital, Cancer and Blood Disorders Center, Seattle, Washington.|Seattle Children's Research Institute, Center for Clinical and Translational Research, Seattle, Washington.
authors.forename: Claire M
authors.initials: CM
authors.lastname: Wharton
authors.affiliation: Seattle Children's Research Institute, Center for Clinical and Translational Research, Seattle, Washington.
authors.forename: Miranda
authors.initials: M
authors.lastname: Bradford
authors.affiliation: Seattle Children's Research Institute, Center for Clinical and Translational Research, Seattle, Washington.|Department of Pediatrics, University of Washington, Seattle, Washington.
authors.forename: Michele L
authors.initials: ML
authors.lastname: Shaffer
authors.affiliation: Department of Medicine, Boston Children's Hospital, Boston, Massachusetts.|Department of Pediatric Hematology/Oncology, Harvard Medical School, Boston, Massachusetts.|Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Seattle, Washington.
authors.forename: Joanne
authors.initials: J
authors.lastname: Wolfe
authors.affiliation: Seattle Children's Hospital, Cancer and Blood Disorders Center, Seattle, Washington.|Seattle Children's Research Institute, Center for Clinical and Translational Research, Seattle, Washington.|Department of Pediatrics, University of Washington, Seattle, Washington.|Clinical Research Division, Fred Hutchinson Cancer Research Center, Seattle, Washington.
authors.forename: Kevin Scott
authors.initials: KS
authors.lastname: Baker
mesh_terms: D000293:Adolescent; D000328:Adult; D005260:Female; D006302:Health Services Research; D006801:Humans; D008297:Male; D009369:Neoplasms; D010358:Patient Participation / Q000379:methods*; D012107:Research Design; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: Adolescent and Young Adult Oncology (AYA); health-services research; patient-reported outcomes; pediatric cancer