High Distress in Parents Whose Children Undergo Predictive Testing for Long QT Syndrome

Hendriks, Karin S.W.H.; Grosfeld, F.J.M.; Wilde, Arthur A.M.; Bout, Jan van den; Langen, Irene M. van; Tintelen, J. Peter van; Kroode, H.F.J. ten

doi:10.1159/000084778

Cited by 33 publications

(26 citation statements)

References 60 publications

(40 reference statements)

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“…The risk status of their child apparently imposes a tangible instead of a hypothetical threat for these parents. We suggested earlier that the re-experiencing of events related to sudden or near deaths in the family may also explain this finding [Hendriks et al, 2005].…”

Section: Discussionmentioning

confidence: 71%

“…In an earlier study, we reported that no less than 50% of the parents who were informed that their child is a mutation carrier showed clinically relevant high levels of distress at the short term [Hendriks et al, 2005]. In view of this high figure, it was relevant to examine if our group of parents would react, as favorable in the long term as the parents mentioned in the other studies.…”

Section: Introductionmentioning

confidence: 83%

“…The initial distress at T 1 remained high at T 2 for parents of carrier children. A significant decline occurred in test related anxiety scores of parents of non-carrier children [Hendriks et al, 2005]. At the 18-months follow-up (T 3 ), the parents of carrier and noncarrier children differed in the amount of disease-related anxiety and depression they reported.…”

Section: Levels Of Psychological Distress In Parentsmentioning

confidence: 93%

See 2 more Smart Citations

Can parents adjust to the idea that their child is at risk for a sudden death?: Psychological impact of risk for long QT syndrome

Hendriks

Grosfeld

Tintelen

et al. 2005

American J of Med Genetics Pt A

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Can a parent adjust to the idea that its child is at risk for a sudden death? This question is raised by a diagnostic procedure in which children were tested for an inherited Long QT Syndrome (LQTS). This potentially life-threatening but treatable cardiac arrhythmia syndrome may cause sudden death, especially in children and young adults. The long-term psychological effects are described for parents whose children were tested for inherited LQTS. The adverse short-term impact of such testing has been described previously. The goal of this investigation is to determine whether this distress endures. Thirty-six parents completed measures of psychological distress. With the twenty-four parents of carrier children, a semi-structured interview was held 18 months after DNA disclosure. Parents of carrier children reported more distress than parents of non-carrier children. Parents of carrier children remained vulnerable to high levels of distress; up to one-third of these parents showed clinically relevant high levels of distress. High levels of distress were reported by parents of carrier children who (1) were highly distressed at previous assessments, (2) were familiar with the disease for a longer time, (3) had experienced a sudden death in the family, (4) were lesser educated, and who (5) were unsatisfied with the given information. Parents were particularly concerned about possible hazardous behavior during puberty. We conclude that the continuous threat of developing LQTS symptoms despite prophylactic treatment affected the psychological well-being of the parents for a long time. In light of the tempetuous developments in the areas of cardiac genetics, periodical information on new insight and developments may act as a buffer for the parents' (growing) concerns about their child's inherited disorder.

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Section: Discussionmentioning

confidence: 71%

Section: Introductionmentioning

confidence: 83%

Section: Levels Of Psychological Distress In Parentsmentioning

confidence: 93%

See 1 more Smart Citation

Can parents adjust to the idea that their child is at risk for a sudden death?: Psychological impact of risk for long QT syndrome

Hendriks

Grosfeld

Tintelen

et al. 2005

American J of Med Genetics Pt A

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show abstract

“…As in the adult population, high levels of distress and anxiety were observed in Ϸ50% of parents after disclosure of abnormal or uncertain ECG results in their children. 76 The level of anxiety was essentially unchanged after receiving a positive gene test result, and persisted at 18 months of follow-up. In contrast, negative gene test results lowered distress scores.…”

Section: Parental Influences and Perceptionsmentioning

confidence: 95%

Psychological Issues in Genetic Testing for Inherited Cardiovascular Diseases

Aatre

Day

2011

Circ Cardiovasc Genet

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“…Genetic counseling is inextricably connected to obtaining the molecular genetic testing, and the associated costs (also significant) should therefore be considered an inherent part of the process. In addition, as presymptomatic testing (ie, genetic testing and cardiologic evaluation) has significant psychological impact, 3,4 it cannot be emphasized enough that (cardio-) genetic testing requires a concerted action of dedicated cardiologists, clinical geneticists, and social workers. Furthermore, the mere fact that almost half of the patients referred to the Mayo Clinics for LQTS (genetic) testing did not have LQTS 5 emphasizes that these tests are best ordered/coordinated by dedicated "cardiogeneticists," be it either with a cardiological or genetic background.…”

Section: Article See Pmentioning

confidence: 99%