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High distress in parents whose children undergo predictive testing for long QT syndrome
Karin S W H Hendriks1, F J M Grosfeld, A A M Wilde
1Department of Medical Psychology, University Medical Center Utrecht, The Netherlands.
Insights
Predictive genetic testing for long QT syndrome (LQTS) significantly impacts parents. Many parents of children with LQTS mutations experienced high psychological distress, especially those with prior disease exposure.
Area of Science:
- Genetics
- Psychology
- Pediatrics
Background:
- Long QT syndrome (LQTS) is a genetic disorder affecting heart rhythm.
- Predictive genetic testing can identify at-risk children and family members.
- Understanding the psychological impact on parents is crucial for supportive care.
Purpose of the Study:
- To evaluate the psychological distress experienced by parents undergoing predictive testing for LQTS in their children.
- To identify factors associated with parental distress following genetic test results.
Main Methods:
- A prospective study involving 36 parents of children screened for LQTS.
- Psychological distress was measured using standardized assessments after DNA test results were delivered.
Main Results:
- 24 parents learned at least one child carried an LQTS mutation.
- Up to 50% of parents with carrier children reported clinically significant distress.
- Higher distress was linked to longer disease familiarity, family history, and all children being carriers.
Conclusions:
- Predictive electrocardiography (ECG) and DNA testing for LQTS have a substantial psychological effect on parents.
- Genetic testing results can cause significant parental distress, highlighting the need for genetic counseling and psychological support.
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.
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