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Acceptability and Usability of the Family Gene Toolkit for Swiss and Korean Families Harboring BRCA1/BRAC2 Pathogenic Variants: A Web-Based Platform for Cascade Genetic Testing

 Vasiliki Baroutsou  ;  Vu Duong  ;  Alice Signorini  ;  Ramon Saccilotto  ;  Florina M Ciorba  ;  Nicole Bürki  ;  Maria Caiata-Zufferey  ;  Jai Min Ryu  ;  Sung-Won Kim  ;  Myong Cheol Lim  ;  Christian Monnerat  ;  Ursina Zürrer-Härdi  ;  Jisun Kim  ;  Karl Heinimann  ;  Rossella Graffeo  ;  Ji Soo Park  ;  Manuela Rabaglio  ;  Pierre Olivier Chappuis  ;  Sue Kim  ;  Maria C Katapodi  ;  On Behalf Of The Cascade And K-Cascade Consortia 
 CANCERS, Vol.15(18) : 4485, 2023-09 
Journal Title
Issue Date
HBOC ; Tier 1 genetic condition ; active coping ; decisional support ; family communication ; genetic counseling ; psychoeducational intervention
The study adapted the Family Gene Toolkit and developed a customized web application for Swiss and Korean families harboring BRCA1 or BRCA2 pathogenic variants to support family communication of genetic testing results and promote cascade genetic testing among at-risk relatives. In the first step, narrative data from 68 women with BRCA1/BRCA2 pathogenic variants and clinician feedback informed a culturally sensitive adaptation of the content consistent with current risk management guidelines. In the second step, the Information Technology team developed the functions and the interface of the web application that will host the intervention. In the third step, a new sample of 18 women from families harboring BRCA1/BRCA2 pathogenic variants tested the acceptability and usability of the intervention using "think-aloud" interviews and a questionnaire. Participants expressed high levels of satisfaction with the intervention. They provided positive feedback for the information regarding active coping, strategies to enhance family communication, interactive elements, and illustrative stories. They reported that the information was useful and the web application was easy to navigate. Findings suggest that the Family Gene Toolkit is well-designed and can increase rates of cascade testing among at-risk relatives. Its efficacy will be tested in a subsequent randomized trial.
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1. College of Medicine (의과대학) > Dept. of Internal Medicine (내과학교실) > 1. Journal Papers
3. College of Nursing (간호대학) > Dept. of Nursing (간호학과) > 1. Journal Papers
Yonsei Authors
Kim, Sue(김수) ORCID logo https://orcid.org/0000-0003-3785-2445
Park, Ji Soo(박지수) ORCID logo https://orcid.org/0000-0002-0023-7740
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