Patterns of family communication and preferred resources for sharing information among families with a Lynch syndrome diagnosis.
Jenna Petersen, Cathryn Koptiuch, Yelena P Wu and 9 others
PMID 30097381WHAT IT FOUND
Families with Lynch syndrome usually shared genetic test results with parents, siblings and children, but less often with aunts, uncles and cousins.
Websites, printed materials and specialty clinic contact were preferred resources.
Key findings
01Most participants shared test results with siblings and parents.
02Probands shared with extended relatives more often than family members did.
03Websites, printed materials and specialty clinic contact were rated helpful by most participants.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The sample was mostly Caucasian and came from one academic cancer center, so it may not represent other families or settings. Communication was self-reported, and the study did not know the total family size, so it could not estimate what proportion of all relatives were told. The study did not capture the content of family conversations, only who was told and what resources were received or preferred. People who did not respond to invitations or were not reached may differ in family communication or information needs. Helpfulness ratings are perceptions, not tested evidence that resources improve sharing or cascade testing.
Declared interests
The supplied text lists NIH extramural and non-U.S. government research support. It does not include an author conflict-of-interest declaration.
The easy way to misread this
Do not read these resource preferences as evidence that giving a website or pamphlet increases cascade testing. The study only asked families what they received and would have found helpful.