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Health‐related quality of life of children with a positive carrier status for inherited cardiovascular diseases
Author(s) -
Smets Ellen M.A.,
Stam Marinka M.H.,
Meulenkamp Tineke M.,
van Langen Irene M.,
Wilde Arthur A.M.,
Wiegman Albert,
de Wert Guido M.,
Tibben Aad
Publication year - 2008
Publication title -
american journal of medical genetics part a
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.064
H-Index - 112
eISSN - 1552-4833
pISSN - 1552-4825
DOI - 10.1002/ajmg.a.32218
Subject(s) - medicine , quality of life (healthcare) , environmental health , gerontology , psychology , nursing
Familial hypercholesterolemia, hypertrophic cardiomyopathy, and long QT Syndrome are genetic cardiovascular conditions which may lead to sudden cardiac death at a young age. Preventive measures include lifestyle modifications, medications, and/or cardiac devices. Hence, identification of carrier children can protect them for the potentially life threatening consequences at a young age. Yet, informing children about their genetic risk status and subjecting them to treatment may have negative consequences. This preliminary study aimed to explore (1) how the health‐related quality of life of carrier children compares to the quality of life of Dutch children in general; and (2) to what extent the carrier children's quality of life and their parents' perception thereof concur. Our method involved carrier children (n = 35), aged between 8 and 18 years, and their parents (n = 37) who completed a self‐report questionnaire. Children's health‐related quality of life was assessed with a children and parent version of the KIDSCREEN. Dutch reference data were available from a representative national sample. Our results show no statistically significant differences in scores between carrier children and the reference group. Also, no differences were found between carrier children and their parents' ratings, with the exception of the scale “psychological well being”. Parents rated their child's psychological well being significantly lower. We identified no problems with the well‐being of carrier children as compared to a representative sample of peers. This may offer some initial reassurance to those who have concerns about the implications of genetically testing children for one of these cardiovascular conditions. Yet, attention to possible problems in these children remains warranted. © 2008 Wiley‐Liss, Inc.