High distress in parents whose children undergo predictive testing for long QT syndrome

FJM Grosfeld, AAM Wilde, J van den Bout, IM van Langen, JP van Tintelen, HFJ ten Kroode*

*Bijbehorende auteur voor dit werk

OnderzoeksoutputAcademicpeer review

30 Citaten (Scopus)


Objectives: To assess the psychological effect of predictive testing in parents of children at risk for long QT syndrome (LQTS) in a prospective study. Methods: After their child was clinically screened by electrocardiography and blood was taken for DNA analysis, and shortly after delivery of the DNA test result, 36 parents completed measures of psychological distress. Results: 24 parents were informed that at least one of their children is a mutation carrier. Up to 50% of the parents of carrier children showed clinically relevant high levels of distress. Parents who were familiar with the disease for a longer time, who had more experiences with the disease in their family and who received positive test results for all their children were most distressed. Conclusions: Predictive ECG testing together with DNA testing has a profound impact on parents whose minors undergo predictive testing for LQTS. Copyright (c) 2005 S. Karger AG, Basel.

Originele taal-2English
Pagina's (van-tot)103-113
Aantal pagina's11
TijdschriftCommunity Genetics
Nummer van het tijdschrift2
StatusPublished - 2005

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