Informing relatives at risk of inherited cardiac conditions: experiences and attitudes of healthcare professionals and counselees.

ABSTRACT: Inherited cardiac conditions (ICCs) can lead to sudden cardiac death at young age, even without previous symptoms, yet often remain undetected. To prevent sudden cardiac death, cardiac monitoring and/or predictive DNA testing is advised for at-risk relatives. Probands in whom a causal variant is detected are asked to inform their relatives about the possibility of testing, often supported by a family letter. This qualitative study investigates experiences with and attitudes toward this family-mediated approach in ICCs and explores whether and how improvements can be made. Two online focus groups were conducted with 28 healthcare professionals (HCPs) from various disciplines, as were 25 face-to-face semi-structured interviews with counselees (10 probands; 15 relatives). Data were analysed b

SUBMITTER: van den Heuvel LM 

PROVIDER: S-EPMC6777450 | biostudies-literature | 2019 Sep

REPOSITORIES: biostudies-literature