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Volume 29
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Article

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

by
Carla Vlooswijk
1,
Lonneke V. van de Poll-Franse
1,2,3,
Silvie H. M. Janssen
2,4,
Esther Derksen
1,
Milou J. P. Reuvers
4,
Rhodé Bijlsma
5,
Suzanne E. J. Kaal
6,7,
Jan Martijn Kerst
4,
Jacqueline M. Tromp
8,
Monique E. M. M. Bos
9,
Tom van der Hulle
10,
Roy I. Lalisang
11,
Janine Nuver
12,
Mathilde C. M. Kouwenhoven
13,
Winette T. A. van der Graaf
4,9 and
Olga Husson
2,4,14,15,*
1
Research and Development, Netherlands Comprehensive Cancer Organisation, 3511 DT Utrecht, The Netherlands
2
Department of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, 1066 CX Amsterdam, The Netherlands
3
Department of Medical and Clinical Psychology, Tilburg University, 5037 AB Tilburg, The Netherlands
4
Department of Medical Oncology, Netherlands Cancer Institute-Antoni van Leeuwenhoek, 1066 CX Amsterdam, The Netherlands
5
Department of Medical Oncology, University Medical Center, 3584 CX Utrecht, The Netherlands
6
Department of Medical Oncology, Radboud University Medical Center, 6525 GA Nijmegen, The Netherlands
7
Dutch AYA ‘Young and Cancer’ Care Network, Netherlands Comprehensive Cancer Organisation, 3511 DT Utrecht, The Netherlands
8
Department of Medical Oncology, Amsterdam University Medical Centers, 1105 AZ Amsterdam, The Netherlands
9
Department of Medical Oncology, Erasmus MC Cancer Institute, Erasmus University Medical Center, 3015 GD Rotterdam, The Netherlands
10
Department of Medical Oncology, Leiden University Medical Center, 2333 ZA Leiden, The Netherlands
11
Department of Internal Medicine, GROW-School of Oncology and Reproduction, Maastricht UMC+ Comprehensive Cancer Center, 6229 HX Maastricht, The Netherlands
12
Department of Medical Oncology, University Medical Center Groningen, 9713 GZ Groningen, The Netherlands
13
Department of Neurology, Amsterdam UMC, Amsterdam University Medical Centers, Location VUmc, 1081 HV Amsterdam, The Netherlands
14
Department of Surgical Oncology, Erasmus MC Cancer Institute, Erasmus University Medical Center, 3015 GD Rotterdam, The Netherlands
15
Division of Clinical Studies, Institute of Cancer Research and Royal Marsden NHS Foundation Trust, London SM2 5PT, UK
 
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*
Author to whom correspondence should be addressed.
Curr. Oncol. 2022, 29(8), 5407-5425; https://doi.org/10.3390/curroncol29080428
Submission received: 10 June 2022 / Revised: 13 July 2022 / Accepted: 26 July 2022 / Published: 29 July 2022
(This article belongs to the Special Issue Adolescent and Young Adult Oncology—Ongoing Challenges and Developments in the Future)
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Abstract

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

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MDPI and ACS Style

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.; et al. Recruiting Adolescent and Young Adult Cancer Survivors for Patient-Reported Outcome Research: Experiences and Sample Characteristics of the SURVAYA Study. Curr. Oncol. 2022, 29, 5407-5425. https://doi.org/10.3390/curroncol29080428

AMA Style

Vlooswijk C, Poll-Franse LVvd, Janssen SHM, Derksen E, Reuvers MJP, Bijlsma R, Kaal SEJ, Kerst JM, Tromp JM, Bos MEMM, et al. Recruiting Adolescent and Young Adult Cancer Survivors for Patient-Reported Outcome Research: Experiences and Sample Characteristics of the SURVAYA Study. Current Oncology. 2022; 29(8):5407-5425. https://doi.org/10.3390/curroncol29080428

Chicago/Turabian Style

Vlooswijk, Carla, 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, and et al. 2022. "Recruiting Adolescent and Young Adult Cancer Survivors for Patient-Reported Outcome Research: Experiences and Sample Characteristics of the SURVAYA Study" Current Oncology 29, no. 8: 5407-5425. https://doi.org/10.3390/curroncol29080428

APA Style

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. (2022). Recruiting Adolescent and Young Adult Cancer Survivors for Patient-Reported Outcome Research: Experiences and Sample Characteristics of the SURVAYA Study. Current Oncology, 29(8), 5407-5425. https://doi.org/10.3390/curroncol29080428

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