Family Relationships Associated With Communication and Testing for Inherited Cardiac Conditions.
Lisa L Shah, Sandra Daack-Hirsch, Anne L Ersig and 3 others
PMID 30539690WHAT IT FOUND
In families with inherited heart conditions, 52.5% of at-risk relatives were informed about their risk.
More frequent contact was linked to relatives being informed and tested; living farther away was not, once contact was considered.
Key findings
01Only 52.5% of at-risk relatives were informed about their genetic risk, with 90% of first-degree relatives, 61% of second-degree relatives, and 33% of third-degree relatives informed.
02Communication frequency was the relationship characteristic most strongly linked to relatives being informed and tested; geographic distance was not linked to either outcome after communication frequency was included in the model.
03Among relatives informed about risk, about half were tested; 64% of first-degree relatives and 38% of third-degree relatives were tested.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
Relatives' informed and tested status was reported by participants and was not confirmed with relatives or medical records. Relatives whose informed status was unknown were counted as not informed in analyses. The sample was not racially or ethnically diverse and came from two clinical sites, so it may not represent all families with these conditions. Survey validity was limited to content and face validity because each survey was personalized. Individual, disease, and communication strategy factors were not analyzed because of variability and recall difficulty. The cross-sectional design measured relationship characteristics and outcomes at the same time, so it cannot show that changing contact frequency would increase informing or testing.
Declared interests
No conflicts-of-interest declaration is provided in the supplied article text. The listed publication types include NIH extramural and non-U.S. government research support.
The easy way to misread this
Do not conclude that moving closer or sending provider letters will make relatives get tested. The study did not test these actions, and after communication frequency was considered, geographic distance was not linked to relatives being informed or tested.