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Publication type: Article in scientific journal
Type of review: Peer review (publication)
Title: Using a tailored digital health intervention for family communication and cascade genetic testing in Swiss and Korean families with hereditary breast and ovarian cancer : protocol for the DIALOGUE study
Authors: Kim, Sue
Aceti, Monica
Baroutsou, Vasiliki
Bürki, Nicole
Caiata-Zufferey, Maria
Cattaneo, Marco
Chappuis, Pierre O
Ciorba, Florina M
Graffeo-Galbiati, Rossella
Heinzelmann-Schwarz, Viola
Jeong, Joon
Jung, MiSook M
Kim, Sung-Won
Kim, Jisun
Lim, Myong Cheol
Ming, Chang
Monnerat, Christian
Park, Hyung Seok
Park, Sang Hyung
Pedrazzani, Carla A
Rabaglio, Manuela
Ryu, Jai Min
Saccilotto, Ramon
Wieser, Simon
Zürrer-Härdi, Ursina
Katapodi, Maria C
et. al: No
DOI: 10.2196/26264
Published in: JMIR Research Protocols
Volume(Issue): 10
Issue: 6
Page(s): e26264
Issue Date: 11-Jun-2021
Publisher / Ed. Institution: JMIR Publications
ISSN: 1929-0748
Language: English
Subjects: HBOC; RE-AIM; Cultural and linguistic adaptation; Proportion of informed at-risk relatives
Subject (DDC): 362: Health and social services
Abstract: Background: In hereditary breast and ovarian cancer (HBOC), family communication of genetic test results is essential for cascade genetic screening, that is, identifying and testing blood relatives of known mutation carriers to determine whether they also carry the pathogenic variant, and to propose preventive and clinical management options. However, up to 50% of blood relatives are unaware of relevant genetic information, suggesting that potential benefits of genetic testing are not communicated effectively within family networks. Technology can facilitate communication and genetic education within HBOC families. Objective: The aims of this study are to develop the K-CASCADE (Korean–Cancer Predisposition Cascade Genetic Testing) cohort in Korea by expanding an infrastructure developed by the CASCADE (Cancer Predisposition Cascade Genetic Testing) Consortium in Switzerland; develop a digital health intervention to support the communication of cancer predisposition for Swiss and Korean HBOC families, based on linguistic and cultural adaptation of the Family Gene Toolkit; evaluate its efficacy on primary (family communication of genetic results and cascade testing) and secondary (psychological distress, genetic literacy, active coping, and decision making) outcomes; and explore its translatability using the reach, effectiveness, adoption, implementation, and maintenance framework. Methods: The digital health intervention will be available in French, German, Italian, Korean, and English and can be accessed via the web, mobile phone, or tablet (ie, device-agnostic). K-CASCADE cohort of Korean HBOC mutation carriers and relatives will be based on the CASCADE infrastructure. Narrative data collected through individual interviews or mini focus groups from 20 to 24 HBOC family members per linguistic region and 6-10 health care providers involved in genetic services will identify the local cultures and context, and inform the content of the tailored messages. The efficacy of the digital health intervention against a comparison website will be assessed in a randomized trial with 104 HBOC mutation carriers (52 in each study arm). The translatability of the digital health intervention will be assessed using survey data collected from HBOC families and health care providers. Results: Funding was received in October 2019. It is projected that data collection will be completed by January 2023 and results will be published in fall 2023. Conclusions: This study addresses the continuum of translational research, from developing an international research infrastructure and adapting an existing digital health intervention to testing its efficacy in a randomized controlled trial and exploring its translatability using an established framework. Adapting existing interventions, rather than developing new ones, takes advantage of previous valid experiences without duplicating efforts. Culturally sensitive web-based interventions that enhance family communication and understanding of genetic cancer risk are timely. This collaboration creates a research infrastructure between Switzerland and Korea that can be scaled up to cover other hereditary cancer syndromes. Trial Registration: NCT04214210; and CRiS KCT0005643; International Registered Report Identifier (IRRID): PRR1-10.2196/26264
Fulltext version: Published version
License (according to publishing contract): CC BY 4.0: Attribution 4.0 International
Departement: School of Management and Law
Organisational Unit: Winterthur Institute of Health Economics (WIG)
Appears in collections:Publikationen School of Management and Law

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