Patterns of family communication and preferred resources for sharing information among families with a Lynch syndrome diagnosis

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.