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

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 ClinicalTrials.gov NCT04214210; https://clinicaltrials.gov/ct2/show/NCT04214210 and CRiS KCT0005643; https://cris.nih.go.kr/cris/ International Registered Report Identifier (IRRID) PRR1-10.2196/26264

Effect of Psychological Intervention Combined with Dietary Guidance on Quality of Life and Long-Term Efficacy of Bushen Quyu Decoction in Treatment of Patients with Advanced Ovarian Cancer

“…Therefore, it is of great significance to improve the quality of life and prolong the survival time of ovarian cancer patients to pay attention to the changes of their psychological state and control their dietary habits while providing effective treatment for ovarian cancer patients [ 20 ]. Nursing should be based on the patient's condition and actual conditions, implement high-quality psychological interventions and high-quality diet care, and provide guidance on TCM, which reflects the comprehensiveness and individualization of the treatment process [ 21 ]. The implementation of psychological care for patients can improve patients' bad mood, promote their confidence in treatment, and improve treatment compliance, thereby enhancing the treatment effect.…”

Patients’ perceptions and practices of informing relatives: a qualitative study within a randomised trial on healthcare-assisted risk disclosure

“…Nevertheless, besides direct letters through certified mail, other means for improving cascade testing rates should be evaluated. Health system-led risk disclosure [ 36 ], web-based applications facilitating disclosure [ 37 ], and access to genetic counselling [ 38 ] are interventions currently under evaluation. Ultimately, we need to identify a future model that balances the safety and the rights of the patient while ensuring that relatives at risk receive the relevant information.…”

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

“…The adapted Family Gene Toolkit was reviewed by clinicians involved in genetic counseling in Switzerland and Korea and experts in health communication, nursing, psychology, and sociology. Clinicians and experts were identified through the Schweizerischen Arbeitsgemeinschaft für Klinische Krebsforschung (SAKK) Network for Cancer Predisposition Testing and Counseling, through the Oncoplastic Breast Consortium [ 44 ], and through the CASCADE (NCT03124212) [ 45 ] and the K-CASCADE (KCT0005643) [ 46 ] consortia. Experts met in small groups and evaluated the alignment of the content with the current guidelines regarding the management of BRCA1 and BRCA2 -associated cancer risks, the consistency of the translated medical and genetic terms with terminology used in clinical practice, the appropriateness and relevance of messages and illustrative stories, and the appearance, organization, and clarity of the slideshow.…”