Ontology type: schema:ScholarlyArticle Open Access: True
2014-06
AUTHORSNadine A. Kasparian, Blake Fidock, Gary F. Sholler, Christoph Camphausen, David N. Murphy, Stephen G. Cooper, Ritik Kaul, Owen Jones, David S. Winlaw, Edwin P.E. Kirk
ABSTRACTPURPOSE: We sought to identify the demographic, clinical, and psychological factors associated with parents' attendance at clinical genetics services for congenital heart disease. METHODS: A survey assessing access to cardiac genetics services and a range of other variables was sent to the families of 213 children diagnosed with congenital heart disease between the years 2000 and 2009 at the Sydney Children's Hospital, Australia. RESULTS: Of the 114 respondents, 22% had accessed cardiac genetics services. Variables strongly associated with service attendance included presence of a syndrome associated with congenital heart disease (odds ratio = 17.93; P < 0.001) and antenatal diagnosis of congenital heart disease (odds ratio = 4.13; P = 0.02). Most participants (87%) perceived genetic factors as "quite" or "extremely important" in the development of congenital heart disease, and many (73%) believed that receiving information about congenital heart disease and genetics was "quite" or "extremely important"; however, only 36% of participants could recall receiving information of this nature. Forty-two percent of parents reported current concerns about their child's health, and a substantial subset reported levels of depression (26%), anxiety (27%), and stress (32%) warranting clinical attention. CONCLUSION: There is a strong desire among parents of children with congenital heart disease for greater information about the role of genetic factors; however, most families do not access cardiac genetics services and report limited recall of information gathered from other sources. More... »
PAGES460
http://scigraph.springernature.com/pub.10.1038/gim.2013.169
DOIhttp://dx.doi.org/10.1038/gim.2013.169
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N-Triples is a line-based linked data format ideal for batch operations.
curl -H 'Accept: application/n-triples' 'https://scigraph.springernature.com/pub.10.1038/gim.2013.169'
Turtle is a human-readable linked data format.
curl -H 'Accept: text/turtle' 'https://scigraph.springernature.com/pub.10.1038/gim.2013.169'
RDF/XML is a standard XML format for linked data.
curl -H 'Accept: application/rdf+xml' 'https://scigraph.springernature.com/pub.10.1038/gim.2013.169'
This table displays all metadata directly associated to this object as RDF triples.
309 TRIPLES
21 PREDICATES
76 URIs
39 LITERALS
27 BLANK NODES