Current Oncology (Jul 2022)

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

DOI
https://doi.org/10.3390/curroncol29080428
Journal volume & issue
Vol. 29, no. 8
pp. 5407 – 5425

Abstract

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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.

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