Exploration of the optimal model of family member outreach in patients with cancer predisposition syndrome

Burke, Kimberly (2023) Exploration of the optimal model of family member outreach in patients with cancer predisposition syndrome. Masters thesis, Memorial University of Newfoundland.

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Abstract

Background Individuals with a family history of cancer predisposition syndrome are at an elevated risk of multiple cancers. However, approximately 50% of at-risk individuals do not attend genetic counselling and, therefore, cannot benefit from risk-reducing strategies that could decrease the occurrence of cancers associated with the condition. Consequently, it is imperative to explore options to increase hereditary cancer risk communication within affected families for more optimal uptake of genetic counselling. Methods A national cross-sectional study was conducted using an online survey to investigate how probands (the first member in a family to have genetic testing) would like to inform their relatives of the risk of hereditary cancer. Relatives also had the opportunity to respond to questions on how they would like to be informed. Results Generally, there was a high level of acceptance for the health care professionals’ involvement in risk communication among the study’s participants. Preferences for family member outreach in hereditary cancer syndrome were related to demographic characteristics such as education level, annual income, marital status and geographic location. In addition, having a previous cancer diagnosis and other factors such as confidence in speaking with relatives, support from family members and concerns about causing distress were also related. Similarities were noted between the probands and relatives on outreach preferences related to demographic characteristics. Conclusion Even though the family-mediated approach is currently standard care, this method might not be sufficient in cancer risk communication and alternative options that allow for the probands’ involvement with the healthcare provider’s assistance should be explored.

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