Facilitating communication and referrals for families with Lynch syndrome

Abstract

In the past decade, Manitoba has implemented universal screening for Lynch Syndrome (LS) and established a multidisciplinary clinic for annual follow-up, generating tremendous potential for cancer prevention through the identification of individuals with LS and provision of effective surveillance strategies. However, alerting at-risk individuals to genetic testing and cancer prevention strategies is reliant on communication within families and little is known about the facilitators and barriers facing Manitobans. The current study developed an informational resource to facilitate communication and evaluated the resource using a mixed methods approach. Individuals with LS were recruited through various clinics at the Health Sciences Centre in Winnipeg and at-risk relatives were recruited through snowball sampling. A total of 92 participants provided feedback on the informational resource through an online survey. Responses to the Likert scale questions indicated the informational resource was easy to understand and helped users inform their family members. Logistic regression analysis revealed that individuals age 45 or older were about four times more likely to share information about LS with their relatives. Additionally, fifteen individuals with LS participated in a qualitative interview exploring barriers and facilitators to communicating risk information to relatives. Thematic analysis revealed three major themes impacting communication: perceptions of genetic testing, family dynamics, and level of acceptance towards relatives’ autonomy. The numerous subthemes identified were supported by previous literature from other jurisdictions. The results from this study guided proposed revisions to the informational resource and provide recommendations for the development of similar resources for other genetic conditions. The barriers to communication identified in this study should be addressed during genetic counselling sessions to extend the outreach of LS testing and cancer prevention.