Patterns of family communication and preferred resources for sharing information among families with a Lynch syndrome diagnosis. Issue 11 (November 2018)

• Record Type: Journal Article
• Authors: Petersen, Jenna; Koptiuch, Cathryn; Wu, Yelena P.; Mooney, Ryan; Elrick, Ashley; Szczotka, Kathryn; Keener, Megan; Pappas, Lisa; Kanth, Priyanka; Soisson, Andrew; Kohlmann, Wendy; Kaphingst, Kimberly A.
• Is Part Of: Patient education and counseling. Volume 101:Issue 11(2018)
• Page Start: 2011
• Page End: 2017
• Publication Date: 2018-11
• Subjects: Lynch syndrome -- Family communication -- Patient education; Patient education -- Periodicals; Health counseling -- Periodicals; Health education -- Periodicals; Counseling -- Periodicals; Patient Education -- Periodicals; Éducation des patients -- Périodiques; Counseling -- Périodiques; Éducation sanitaire -- Périodiques; 615.5071
• DOI: 10.1016/j.pec.2018.07.021
• Languages: English
• ISSNs: 0738-3991

Abstract

Highlights: Individuals most often share Lynch syndrome test results with first-degree relatives. Details of genetic results and associated cancer risks most challenging topics. Probands and family members find different resources most helpful for learning. Providers may distribute resources to encourage family communication. Abstract: Objectives: To explore patterns of communication among families with a Lynch syndrome diagnosis and understand what resources could facilitate family communication. Methods: 127 probands (i.e., first person in family with identified mutation) and family members participated in semi-structured interviews about: how they learned about the Lynch syndrome diagnosis, with whom they shared genetic test results, confidence in sharing results with other family members, and helpfulness of educational resources. Results: Both probands and family members were most likely to share genetic test results with parents and siblings, and least likely to share results with aunts, uncles, and cousins. Most participants felt very confident sharing their test results with family members, but reported that certain topics such as cancer risk were challenging to convey. Probands reported the most helpful resources to be access to a specialty clinic or website, while family members described general printed materials as most helpful. Conclusions: Families affected by Lynch syndrome may experience barriers to communication with more distant relatives, and may benefit from receiving specific resources (e.g., websites about Lynch syndrome, print materials) to facilitate family communication. Practice implications: Providers could emphasize the need to share information with more distant family members and provide appropriate supportive resources.