Recruiting Adolescent and Young Adult Cancer Survivors for Patient-Reported Outcome Research: Experiences and Sample Characteristics of the SURVAYA Study
Open accessAbstract
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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The 40.5% consent rate is slightly higher, though similar, to recruitment metrics for other behavioral interventions targeting YA cancer survivors and studies involving patient-reported outcomes.
“This number is slightly higher, though similar, to recruitment metrics for other behavioral interventions targeting YA cancer survivors [91, 92] and studies involving patient-reported outcomes [93]”
From Improving symptom management for survivors of young adult cancer: rationale and study protocol for a pilot randomized controlled trial (2024) · cites this paper as [93]
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“…to recruitment metrics for other behavioral interventions targeting YA cancer survivors [91, 92] and studies involving patient-reported outcomes [93] YA’s reasons for declining participation pointed to the significant competing demands experienced by this population (i.e., 53.3% of those who…”
BackgroundInfluential
- Authors
- Vlooswijk, C., Poll-Franse, L. V. V. D., Janssen, S. H. M., Derksen, E., Reuvers, M. J. P., Bijlsma, R., Kaal, S. E. J., Kerst, J. M., Tromp, J. M., Bos, M. E. M. M., Hulle, T. V. D., Lalisang, R. I., Nuver, J., Kouwenhoven, M. C. M., van der Graaf, W. T. A., & Husson, O.
- Affiliations
- Netherlands Comprehensive Cancer Organisation (NL)
- Tilburg University (NL)
- The Netherlands Cancer Institute (NL)
- University Medical Center Utrecht (NL)
- Radboud University Medical Center (NL)
- Amsterdam University Medical Centers (NL)
- Erasmus MC (NL)
- Leiden University Medical Center (NL)
- Maastricht University Medical Centre (NL)
- University Medical Center Groningen (NL)
- Department of Medical Oncology, Netherlands Cancer Institute-Antoni van Leeuwenhoek, 1066 CX Amsterdam, The Netherlands
- Royal Marsden NHS Foundation Trust (GB)
- Corresponding author
- Husson, Olga
- ORCID
- Venue
- Current Oncology
- Publisher
- MDPI AG
- Published
- 2022-07-29
- Volume
- 29
- Issue
- 8
- Pages
- 5407-5425
- ISSN
- 1198-0052 (ISSN-L)
- 1718-7729
- PMC
- PMC9406992
- OpenAlex
- W4289110780
- Cited by
- 39
- References
- 46
- Citations by year
- 2026: 6 · 2025: 12 · 2024: 13 · 2023: 7 · 2022: 1
- FWCI
- 9.06
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- Current Oncology (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Research Publications (Maastricht University) (publishedVersion, cc-by)
- Pure Amsterdam UMC (publishedVersion, cc-by)
- Amsterdam UMC (VU Amsterdam) - Institutional Repository (publishedVersion, other-oa)
- University of Groningen research database (University of Groningen / Centre for Information Technology) (publishedVersion, cc-by)
- Leiden Repository (Leiden University) (submittedVersion, cc-by)
- EUR Research Repository (Erasmus University Rotterdam) (submittedVersion, cc-by)
- Data Archiving and Networked Services (DANS) (submittedVersion, other-oa)
- Data Archiving and Networked Services (DANS) (submittedVersion, cc-by)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Utrecht University Repository (Utrecht University) (submittedVersion, other-oa)
- Radboud Repository (Radboud University) (submittedVersion)
- Radboud Repository (Radboud University) (submittedVersion, other-oa)
- University of Groningen research database (University of Groningen / Centre for Information Technology) (submittedVersion, cc-by)
- Research Publications (Maastricht University) (submittedVersion, other-oa)
- Funders
- Dutch Cancer Society (11788, 198.007, 1480-08-009)
- Netherlands Organization for Scientific Research (11788, 198.007, 1480-08-009)
- 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
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Keywords
- adolescent and young adult cancer survivors, patient-reported outcomes, research recruitment, response rate, non-participation, sample representativeness, questionnaire format, long-term oncological outcomes, psychosocial outcomes
- MeSH terms
- Patient Reported Outcome Measures, Cancer Survivors, Adolescent, Cross-Sectional Studies, Female, Humans, Neoplasms, Surveys and Questionnaires, Young Adult
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