Recruiting Adolescent and Young Adult Cancer Survivors for Patient-Reported Outcome Research: Experiences and Sample Characteristics of the SURVAYA Study

Carla Vlooswijk, Lonneke V.van de Poll-Franse, Silvie H.M. Janssen, Esther Derksen, Milou J.P. Reuvers, Rhodé Bijlsma, Suzanne E.J. Kaal, Jan Martijn Kerst, Jacqueline M. Tromp, Monique E.M.M. Bos, Tom van der Hulle, Roy I. Lalisang, Janine Nuver, Mathilde C.M. Kouwenhoven, Winette T.A. van der Graaf, Olga Husson

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5 Citations (Scopus)


Background: Participation of Adolescents and Young Adults with cancer (AYAs: 18–39 years at time of diagnosis) in patient-reported outcome studies is warranted given the limited knowledge of (long-term) physical and psychosocial health outcomes. We examined the representativeness of AYAs participating in the study, to observe the impact of various invitation methods on response rates and reasons for non-participation. Methods: A population-based, cross-sectional cohort study was performed among long-term (5–20 years) AYA cancer survivors. All participants were invited using various methods to fill in a questionnaire on their health outcomes, including enclosing a paper version of the questionnaire, and sending a reminder. Those who did not respond received a postcard in which they were asked to provide a reason for non-participation. Results: In total, 4.010 AYAs (response 36%) participated. Females, AYAs with a higher socio-economic status (SES), diagnosed more than 10 years ago, diagnosed with a central nervous system tumor, sarcoma, a lymphoid malignancy, stage III, or treated with systemic chemotherapy were more likely to participate. Including a paper questionnaire increased the response rate by 5% and sending a reminder by 13%. AYAs who did not participate were either not interested (47%) or did want to be reminded of their cancer (31%). Conclusions: Study participation was significantly lower among specific subgroups of AYA cancer survivors. Higher response rates were achieved when a paper questionnaire was included, and reminders were sent. To increase representativeness of future AYA study samples, recruitment strategies could focus on integrating patient-reported outcomes in clinical practice and involving AYA patients to promote participation in research.

Original languageEnglish
Pages (from-to)5407-5425
Number of pages19
JournalCurrent Oncology
Issue number8
Publication statusPublished - 1 Aug 2022


  • adolescents and young adults with cancer (AYAs)
  • health-related outcomes
  • non-participation
  • patient-reported outcomes
  • population-based research
  • recruitment strategies

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