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Recruiting Adolescent and Young Adult Cancer Survivors for Patient-Reported Outcome Research: Experiences and Sample Characteristics of the SURVAYA Study
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 participati...
Autores principales: | , , , , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
MDPI
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9406992/ https://www.ncbi.nlm.nih.gov/pubmed/36005166 http://dx.doi.org/10.3390/curroncol29080428 |
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author | Vlooswijk, Carla van de Poll-Franse, Lonneke V. Janssen, Silvie H. M. Derksen, Esther Reuvers, Milou J. P. Bijlsma, Rhodé Kaal, Suzanne E. J. Kerst, Jan Martijn Tromp, Jacqueline M. Bos, Monique E. M. M. van der Hulle, Tom Lalisang, Roy I. Nuver, Janine Kouwenhoven, Mathilde C. M. van der Graaf, Winette T. A. Husson, Olga |
author_facet | Vlooswijk, Carla van de Poll-Franse, Lonneke V. Janssen, Silvie H. M. Derksen, Esther Reuvers, Milou J. P. Bijlsma, Rhodé Kaal, Suzanne E. J. Kerst, Jan Martijn Tromp, Jacqueline M. Bos, Monique E. M. M. van der Hulle, Tom Lalisang, Roy I. Nuver, Janine Kouwenhoven, Mathilde C. M. van der Graaf, Winette T. A. Husson, Olga |
author_sort | Vlooswijk, Carla |
collection | PubMed |
description | 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. |
format | Online Article Text |
id | pubmed-9406992 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | MDPI |
record_format | MEDLINE/PubMed |
spelling | pubmed-94069922022-08-26 Recruiting Adolescent and Young Adult Cancer Survivors for Patient-Reported Outcome Research: Experiences and Sample Characteristics of the SURVAYA Study Vlooswijk, Carla van de Poll-Franse, Lonneke V. Janssen, Silvie H. M. Derksen, Esther Reuvers, Milou J. P. Bijlsma, Rhodé Kaal, Suzanne E. J. Kerst, Jan Martijn Tromp, Jacqueline M. Bos, Monique E. M. M. van der Hulle, Tom Lalisang, Roy I. Nuver, Janine Kouwenhoven, Mathilde C. M. van der Graaf, Winette T. A. Husson, Olga Curr Oncol Article 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. MDPI 2022-07-29 /pmc/articles/PMC9406992/ /pubmed/36005166 http://dx.doi.org/10.3390/curroncol29080428 Text en © 2022 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/). |
spellingShingle | Article Vlooswijk, Carla van de Poll-Franse, Lonneke V. Janssen, Silvie H. M. Derksen, Esther Reuvers, Milou J. P. Bijlsma, Rhodé Kaal, Suzanne E. J. Kerst, Jan Martijn Tromp, Jacqueline M. Bos, Monique E. M. M. van der Hulle, Tom Lalisang, Roy I. Nuver, Janine Kouwenhoven, Mathilde C. M. van der Graaf, Winette T. A. Husson, Olga Recruiting Adolescent and Young Adult Cancer Survivors for Patient-Reported Outcome Research: Experiences and Sample Characteristics of the SURVAYA Study |
title | Recruiting Adolescent and Young Adult Cancer Survivors for Patient-Reported Outcome Research: Experiences and Sample Characteristics of the SURVAYA Study |
title_full | Recruiting Adolescent and Young Adult Cancer Survivors for Patient-Reported Outcome Research: Experiences and Sample Characteristics of the SURVAYA Study |
title_fullStr | Recruiting Adolescent and Young Adult Cancer Survivors for Patient-Reported Outcome Research: Experiences and Sample Characteristics of the SURVAYA Study |
title_full_unstemmed | Recruiting Adolescent and Young Adult Cancer Survivors for Patient-Reported Outcome Research: Experiences and Sample Characteristics of the SURVAYA Study |
title_short | Recruiting Adolescent and Young Adult Cancer Survivors for Patient-Reported Outcome Research: Experiences and Sample Characteristics of the SURVAYA Study |
title_sort | recruiting adolescent and young adult cancer survivors for patient-reported outcome research: experiences and sample characteristics of the survaya study |
topic | Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9406992/ https://www.ncbi.nlm.nih.gov/pubmed/36005166 http://dx.doi.org/10.3390/curroncol29080428 |
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