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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.

Authors :
Baroutsou, Vasiliki
Duong, Vu
Signorini, Alice
Saccilotto, Ramon
Ciorba, Florina M.
Bürki, Nicole
Caiata-Zufferey, Maria
Ryu, Jai Min
Kim, Sung-Won
Lim, Myong Cheol
Monnerat, Christian
Zürrer-Härdi, Ursina
Kim, Jisun
Heinimann, Karl
Graffeo, Rossella
Park, Ji Soo
Rabaglio, Manuela
Chappuis, Pierre Olivier
Kim, Sue
Katapodi, Maria C.
Source :
Cancers. Sep2023, Vol. 15 Issue 18, p4485. 16p.
Publication Year :
2023

Abstract

Simple Summary: The study adapted an existing Web-based intervention, the Family Gene Toolkit, for Swiss and Korean families that harbor the genetic changes associated with hereditary breast and ovarian cancer syndrome. The Family Gene Toolkit encourages family communication of genetic testing results and cascade genetic testing among at-risk relatives. Feedback from 68 women with genetic changes and 31 clinicians informed the culturally sensitive adaptation of the content. The Information Technology team developed the web application that will host the intervention. Finally, a new sample of 18 women from families with hereditary breast and ovarian cancer reviewed and evaluated the adapted content and the functions of the web application. Findings support that overall, the adapted Family Gene Toolkit is well-designed, has useful information for these families, and provides interactive content and illustrative stories. The research team will test if it can increase rates of cascade testing among at-risk relatives in a subsequent randomized trial. 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. [ABSTRACT FROM AUTHOR]

Details

Language :
English
ISSN :
20726694
Volume :
15
Issue :
18
Database :
Academic Search Index
Journal :
Cancers
Publication Type :
Academic Journal
Accession number :
172419269
Full Text :
https://doi.org/10.3390/cancers15184485