A tailored approach to informing relatives at risk of inherited cardiac conditions: results of a randomised controlled trial.

ABSTRACT: If undetected, inherited cardiac conditions can lead to sudden cardiac death, while treatment options are available. Predictive DNA testing is therefore advised for at-risk relatives, and probands are currently asked to inform relatives about this. However, fewer than half of relatives attend genetic counselling. In this trial, we compared a tailored approach to informing relatives, in which probands were asked whether they preferred relatives to be informed by themselves or by the genetic counsellor, with current practice. Our primary outcome was uptake of genetic counselling in relatives in the first year after test result disclosure. Secondary outcomes were evaluation of the approach and impact on psychological/family functioning measured 3 (T1) and 9 (T2) months post-disclosure via tel

SUBMITTER: van den Heuvel LM 

PROVIDER: S-EPMC8821591 | biostudies-literature | 2022 Feb

REPOSITORIES: biostudies-literature