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...
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| Format: | Article |
| Language: | English |
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MDPI AG
2022-07-01
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| Series: | Current Oncology |
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| Online Access: | https://www.mdpi.com/1718-7729/29/8/428 |
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| author | 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 |
| author_facet | 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 |
| author_sort | Carla Vlooswijk |
| collection | DOAJ |
| 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. |
| first_indexed | 2024-03-09T04:35:05Z |
| format | Article |
| id | doaj.art-97884f2644a9406ba9630ba145aa510a |
| institution | Directory Open Access Journal |
| issn | 1198-0052 1718-7729 |
| language | English |
| last_indexed | 2024-03-09T04:35:05Z |
| publishDate | 2022-07-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Current Oncology |
| spelling | doaj.art-97884f2644a9406ba9630ba145aa510a2023-12-03T13:30:40ZengMDPI AGCurrent Oncology1198-00521718-77292022-07-012985407542510.3390/curroncol29080428Recruiting Adolescent and Young Adult Cancer Survivors for Patient-Reported Outcome Research: Experiences and Sample Characteristics of the SURVAYA StudyCarla Vlooswijk0Lonneke V. van de Poll-Franse1Silvie H. M. Janssen2Esther Derksen3Milou J. P. Reuvers4Rhodé Bijlsma5Suzanne E. J. Kaal6Jan Martijn Kerst7Jacqueline M. Tromp8Monique E. M. M. Bos9Tom van der Hulle10Roy I. Lalisang11Janine Nuver12Mathilde C. M. Kouwenhoven13Winette T. A. van der Graaf14Olga Husson15Research and Development, Netherlands Comprehensive Cancer Organisation, 3511 DT Utrecht, The NetherlandsResearch and Development, Netherlands Comprehensive Cancer Organisation, 3511 DT Utrecht, The NetherlandsDepartment of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, 1066 CX Amsterdam, The NetherlandsResearch and Development, Netherlands Comprehensive Cancer Organisation, 3511 DT Utrecht, The NetherlandsDepartment of Medical Oncology, Netherlands Cancer Institute-Antoni van Leeuwenhoek, 1066 CX Amsterdam, The NetherlandsDepartment of Medical Oncology, University Medical Center, 3584 CX Utrecht, The NetherlandsDepartment of Medical Oncology, Radboud University Medical Center, 6525 GA Nijmegen, The NetherlandsDepartment of Medical Oncology, Netherlands Cancer Institute-Antoni van Leeuwenhoek, 1066 CX Amsterdam, The NetherlandsDepartment of Medical Oncology, Amsterdam University Medical Centers, 1105 AZ Amsterdam, The NetherlandsDepartment of Medical Oncology, Erasmus MC Cancer Institute, Erasmus University Medical Center, 3015 GD Rotterdam, The NetherlandsDepartment of Medical Oncology, Leiden University Medical Center, 2333 ZA Leiden, The NetherlandsDepartment of Internal Medicine, GROW-School of Oncology and Reproduction, Maastricht UMC+ Comprehensive Cancer Center, 6229 HX Maastricht, The NetherlandsDepartment of Medical Oncology, University Medical Center Groningen, 9713 GZ Groningen, The NetherlandsDepartment of Neurology, Amsterdam UMC, Amsterdam University Medical Centers, Location VUmc, 1081 HV Amsterdam, The NetherlandsDepartment of Medical Oncology, Netherlands Cancer Institute-Antoni van Leeuwenhoek, 1066 CX Amsterdam, The NetherlandsDepartment of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, 1066 CX Amsterdam, The NetherlandsBackground: 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.https://www.mdpi.com/1718-7729/29/8/428adolescents and young adults with cancer (AYAs)population-based researchhealth-related outcomesnon-participationrecruitment strategiespatient-reported outcomes |
| spellingShingle | 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 Recruiting Adolescent and Young Adult Cancer Survivors for Patient-Reported Outcome Research: Experiences and Sample Characteristics of the SURVAYA Study Current Oncology adolescents and young adults with cancer (AYAs) population-based research health-related outcomes non-participation recruitment strategies patient-reported outcomes |
| 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 | adolescents and young adults with cancer (AYAs) population-based research health-related outcomes non-participation recruitment strategies patient-reported outcomes |
| url | https://www.mdpi.com/1718-7729/29/8/428 |
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