Exploring family communication preferences in hereditary breast and ovarian cancer and Lynch syndrome: A national Canadian survey

Abstract

Abstract Background: Individuals affected with cancer predisposition syndromes such as BRCA1, BRCA2 or Lynch syndrome are at an elevated risk of multiple cancers. Identifying high-risk individuals is important if they are to access risk-reducing strategies. Interventions such as risk-reducing salpingo-oophorecomty in BRCA carriers or regular colonoscopy for carriers of Lynch syndrome are highly effective and reduce mortality. Despite clear evidence that the identification of at-risk relatives has value, the uptake of genetic testing remains at approximately 50%. It is important to understand better and explore options to improve hereditary cancer risk communication within affected families to ensure the uptake of genetic counselling and testing by those who wish it. Method: A national online survey of both Canadian probands (the first member in a family to have genetic testing) and at-risk relatives. Respondents were individuals affected with hereditary breast and ovarian cancer and Lynch syndrome. Survey items explored experiences with hereditary cancer risk communication, communication challenges, preferences and supports required. Results: Responses indicated a high level of acceptance for proband involvement in family communication, but also for support by providers in the process (67% among the probands given a family letter and 55–57% among those who were not given a family letter). Respondents without a history of cancer were more likely to desire a health care professional’s help with family communication compared to those with a history of cancer. Preferences for family member outreach also varied by education level, annual income, marital status and geographic location. Similarities were noted between the probands and relatives on communication outreach preferences. Conclusion: While the family-mediated approach to communication remains the standard of care in many places, it may not meet the needs of most individuals affected with hereditary cancer syndromes. Alternative options that retain the probands’ involvement in family communication but add support from a health care provider should be explored.