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

Karin S W H Hendriks; F J M Grosfeld; A A M Wilde; J van den Bout; I M van Langen; J P van Tintelen; H F J ten Kroode

doi:10.1159/000084778

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

Community Genet. 2005;8(2):103-13. doi: 10.1159/000084778.

Authors

Karin S W H Hendriks¹, F J M Grosfeld, A A M Wilde, J van den Bout, I M van Langen, J P van Tintelen, H F J ten Kroode

Affiliation

¹ Department of Medical Psychology, University Medical Center Utrecht, The Netherlands.

PMID: 15925886
DOI: 10.1159/000084778

Abstract

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.

MeSH terms

Adolescent
Adult
Attitude to Health*
Child
Child, Preschool
Female
Genetic Testing / psychology*
Humans
Infant
Infant, Newborn
Long QT Syndrome / diagnosis*
Long QT Syndrome / genetics
Male
Middle Aged
Parents / psychology*
Predictive Value of Tests
Prospective Studies
Risk