TY - JOUR
T1 - Recruiting Adolescent and Young Adult Cancer Survivors for Patient-Reported Outcome Research
T2 - Experiences and Sample Characteristics of the SURVAYA Study
AU - Vlooswijk, Carla
AU - Poll-Franse, Lonneke V van de
AU - Janssen, Silvie H M
AU - Derksen, Esther
AU - Reuvers, Milou J P
AU - Bijlsma, Rhodé
AU - Kaal, Suzanne E J
AU - Kerst, Jan Martijn
AU - Tromp, Jacqueline M
AU - Bos, Monique E M M
AU - Hulle, Tom van der
AU - Lalisang, Roy I
AU - Nuver, Janine
AU - Kouwenhoven, Mathilde C M
AU - van der Graaf, Winette T A
AU - Husson, Olga
N1 - Funding Information:
Carla Vlooswijk Msc is supported by the Dutch Cancer Society (#11788 COMPRAYA study). Dr. Olga Husson and Silvie Janssen MSc are supported by the Netherlands Organization for Scientific Research VIDI grant (198.007). Data collection of the SURVAYA study was partly supported by the investment grant (#480-08-009) from the Netherlands Organization for Scientific Research. These funding agencies had no further role in study design; in the collection, analysis and interpretation of data; in the writing of the paper; or in the decision to submit the paper for publication.
Publisher Copyright:
© 2022 by the authors.
PY - 2022/7/29
Y1 - 2022/7/29
N2 - 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.
AB - 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.
KW - Adolescent
KW - Cancer Survivors/psychology
KW - Cross-Sectional Studies
KW - Female
KW - Humans
KW - Neoplasms/psychology
KW - Patient Reported Outcome Measures
KW - Surveys and Questionnaires
KW - Young Adult
KW - patient-reported outcomes
KW - non-participation
KW - health-related outcomes
KW - adolescents and young adults with cancer (AYAs)
KW - population-based research
KW - recruitment strategies
UR - https://www.scopus.com/pages/publications/85136590497
U2 - 10.3390/curroncol29080428
DO - 10.3390/curroncol29080428
M3 - Article
C2 - 36005166
SN - 1198-0052
VL - 29
SP - 5407
EP - 5425
JO - Current oncology (Toronto, Ont.)
JF - Current oncology (Toronto, Ont.)
IS - 8
ER -