Development of a Web-based Family Intervention for BRCA Carriers and Their Biological Relatives: Acceptability, Feasibility, and Usability Study

Abstract

BackgroundCarriers of breast cancer gene (BRCA) mutations are asked to communicate genetic test results to their biological relatives to increase awareness of cancer risk and promote use of genetic services. This process is highly variable from family to family. Interventions that support communication of genetic test results, coping, and offer decision support in families harboring a pathogenic variant may contribute to effective management of hereditary cancer.ObjectiveThe aim of this paper was to describe the development of the Family Gene Toolkit, a Web-based intervention targeting BRCA carriers and untested blood relatives, designed to enhance coping, family communication, and decision making.MethodsWe present findings from focus groups regarding intervention acceptability and participant satisfaction and from a pre-post pilot study with random allocation to a wait-listed control group regarding intervention feasibility and usability.ResultsThe Family Gene Toolkit was developed by a multidisciplinary team as a psycho-educational and skills-building intervention. It includes two live webinar sessions and a follow-up phone call guided by a certified genetic counselor and a master’s prepared oncology nurse. Each live webinar includes two modules (total four modules) presenting information about BRCA mutations, a decision aid for genetic testing, and two skill-building modules for effective coping and family communication. Participants in focus groups (n=11) were highly satisfied with the intervention, reporting it to be useful and describing clearly the important issues. From the 12 dyads recruited in the pre-post pilot study (response rate 12/52, 23%), completion rate was 71% (10/14) for intervention and 40% (4/10) for wait-listed control groups.ConclusionsAcceptability and satisfaction with the Family Gene Toolkit is high. On the basis of the findings from usability and feasibility testing, modifications on timing, delivery mode, and recruitment methods have been implemented.Trial RegistrationClinicalTrials.gov NCT02154633; https://clinicaltrials.gov/ct2/show/NCT02154633 (Archived by WebCite at http://www.webcitation.org/6yYNvLPjv)

Predictors and interdependence of family support in a random sample of long‐term young breast cancer survivors and their biological relatives

“…Existing evidence‐based interventions for cancer patients and their family caregivers could be adapted to address the needs of YBCS and their relatives. It is also important for researchers and clinicians to work together and develop technology‐based dyadic interventions that are cost‐effective and accessible to a large number of families …”

“…It is also important for researchers and clinicians to work together and develop technology-based dyadic interventions that are cost-effective and accessible to a large number of families. [76][77][78]…”

Challenges and Opportunities for Cancer Predisposition Cascade Screening for Hereditary Breast and Ovarian Cancer and Lynch Syndrome in Switzerland: Findings from an International Workshop

“…The Family Gene Toolkit is an example of a technology-supported, family-based intervention designed to increase knowledge of HBOC genetics, help mutation-positive individuals and at-risk relatives understand the process and outcomes of genetic counseling and testing, cope with test results, and enhance family communication [60]. The intervention addresses challenges related to managing the quantity and complexity of genetic information that mutation-positive individuals have to communicate.…”

A systematic review of communication interventions to help healthcare professionals discuss genetic testing for breast cancer

“…These conversations play an important role in informing not only an individual's own choices about treatment and surveillance, but potentially those of other members of their family [4,7,[29][30][31]. Unfortunately, there is evidence that HCPs without specific genetic training often lack confidence and knowledge about the referral pathway, the genetic background of inheritance, or how to speak to individuals about genetic testing and risk assessment [11,24,[32][33][34].…”

“…There has been considerable research around aids and interventions for the counselee [ 5 , 24 , 30 , 36 ], along with exploration of the genetic counseling process and dialogue [ 18 , 37 ]. However, training interventions directed at HCPs communicating risk and genetic based information are rare and less well evaluated.…”