Predictors for participation in DNA self-sampling of childhood cancer survivors in Switzerland

Article Article scientifique Article Predictors for participation in DNA self-sampling of childhood cancer survivors in Switzerland eng 2021-10-30 2021-10-30 author Waespe Nicolas 0000-0002-2271-8959 911635 author Strebel Sven 0000-0002-0576-4865 author Marino Denis 649455 author Mattiello Veneranda 766851 author Muet Fanny 930514 author Nava Tiago 0000-0002-8150-5478 863338 author Schindera Christina 0000-0002-4511-287X author Belle Fabien N 0000-0002-0037-4817 author Mader Luzius author Spoerri Adrian 0000-0001-5016-9822 author Kuehni Claudia E 0000-0001-8957-2002 author Ansari Djaberi Marc Georges 0000-0002-9649-6498 61572 236 10.1186/s12874-021-01428-1 34717553 1471-2288 PMC8557596 https://bmcmedresmethodol.biomedcentral.com/articles/10.1186/s12874-021-01428-1 Background: Research on germline genetic variants relies on enough eligible participants which is difficult to achieve for rare diseases such as childhood cancer. With self-collection kits, participants can contribute genetic samples conveniently from their home. Demographic and clinical factors were identified previously that influenced participation in mailed self-collection. People with pre-existing heritable diagnoses might participate differently in germline DNA collection which might render sampling biased in this group. In this nationwide cross-sectional study, we analysed predictive factors of participation in DNA self-collection including heritable diagnoses. Methods: We identified childhood cancer survivors from the Swiss Childhood Cancer Registry for invitation to germline DNA self-sampling in September 2019. Participants received saliva sampling kits by postal mail at their home, were asked to fill them, sign an informed consent, and send them back by mail. Two reminders were sent to non-participants by mail. We compared demographic, clinical, and treatment information of participants with non-participants using univariable and multivariable logistic regression models. Results: We invited 928 childhood cancer survivors in Switzerland with a median age of 26.5 years (interquartile range 19-37), of which 463 (50%) participated. After the initial send out of the sampling kit, 291 (63%) had participated, while reminder letters led to 172 additional participants (37%). Foreign nationality (odds ratio [OR] 0.5; 95%-confidence interval [CI] 0.4-0.7), survivors aged 30-39 years at study versus other age groups (OR 0.5; CI 0.4-0.8), and survivors with a known cancer predisposition syndrome (OR 0.5; CI 0.3-1.0) were less likely to participate in germline DNA collection. Survivors with a second primary neoplasm (OR 1.9; CI 1.0-3.8) or those living in a French or Italian speaking region (OR 1.3; CI 1.0-1.8) tended to participate more. Conclusions: We showed that half of childhood cancer survivors participated in germline DNA self-sampling relying completely on mailing of sample kits. Written reminders increased the response by about one third. More targeted recruitment strategies may be advocated for people of foreign nationality, aged 30-39 years, and those with cancer predisposition syndromes. Perceptions of genetic research and potential barriers to participation of survivors need to be better understood. Cancer survivors Childhood cancer Cohort study DNA Drug side effects Genetic polymorphism Genetic predisposition Genetic testing Registry Second primary neoplasm Adult Cancer Survivors Child Cross-Sectional Studies DNA Humans Neoplasms / diagnosis Neoplasms / genetics Switzerland Dewey 618 Swiss National Science Foundation The Swiss Pediatric Hematology/ Oncology Metabank - a network for precision medicine research 31BL30_185396 CH Infrastructure Swiss Cancer Research KFS-4722-02-2019 Swiss Cancer Research KLS/KFS-4825-01-2019 58 Département de pédiatrie, gynécologie et obstétrique 223 false 564 Oncologie et hématologie pédiatriques 907 https://www.biobanksqan.ch/#/biobanks/3919 https://clinicaltrials.gov/ct2/show/NCT04702321 BMC Medical research methodology 21 1 6a31823e-ab5b-46ef-bbee-07af66cd19b3 Article (Published version) Public Article-scientifique-from-unpaywall.pdf 1166770 application/pdf CC BY-4.0 d5646e97-8de4-4259-9f62-a8f15cded2c9 Appendix Public 12874_2021_1428_MOESM1_ESM.pdf 135876 application/pdf openAccess Faculté de médecine / Section de médecine clinique / Département de pédiatrie, gynécologie et obstétrique

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Predictors for participation in DNA self-sampling of childhood cancer survivors in Switzerland	BMC Medical research methodology			2021	255	205

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