title: High distress in parents whose children undergo predictive testing for long QT syndrome.
abstract: OBJECTIVE
  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.
authors.affiliation: Department of Medical Psychology, University Medical Center Utrecht, The Netherlands.
authors.forename: Karin S W H
authors.initials: KS
authors.lastname: Hendriks
authors.forename: F J M
authors.initials: FJ
authors.lastname: Grosfeld
authors.forename: A A M
authors.initials: AA
authors.lastname: Wilde
authors.forename: J
authors.initials: J
authors.lastname: van den Bout
authors.forename: I M
authors.initials: IM
authors.lastname: van Langen
authors.forename: J P
authors.initials: JP
authors.lastname: van Tintelen
authors.forename: H F J
authors.initials: HF
authors.lastname: ten Kroode
mesh_terms: D000293:Adolescent; D000328:Adult; D001294:Attitude to Health; D002648:Child; D002675:Child, Preschool; D005260:Female; D005820:Genetic Testing / Q000523:psychology*; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008133:Long QT Syndrome / Q000175:diagnosis* / Q000235:genetics; D008297:Male; D008875:Middle Aged; D010290:Parents / Q000523:psychology*; D011237:Predictive Value of Tests; D011446:Prospective Studies; D012306:Risk