title: Parents' perceptions of genetics services for congenital heart disease: the role of demographic, clinical, and psychological factors in determining service attendance.
abstract: OBJECTIVE
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: 1] Discipline of Paediatrics, School of Women's and Children's Health, UNSW Medicine, The University of New South Wales, Kensington, New South Wales, Australia [2] Heart Centre for Children, The Children's Hospital at Westmead, Westmead, New South Wales, Australia [3] Discipline of Paediatrics and Child Health, Sydney Medical School, University of Sydney, Sydney, New South Wales, Australia.
authors.forename: Nadine A
authors.initials: NA
authors.lastname: Kasparian
authors.affiliation: Discipline of Paediatrics, School of Women's and Children's Health, UNSW Medicine, The University of New South Wales, Kensington, New South Wales, Australia.
authors.forename: Blake
authors.initials: B
authors.lastname: Fidock
authors.affiliation: 1] Heart Centre for Children, The Children's Hospital at Westmead, Westmead, New South Wales, Australia [2] Discipline of Paediatrics and Child Health, Sydney Medical School, University of Sydney, Sydney, New South Wales, Australia.
authors.forename: Gary F
authors.initials: GF
authors.lastname: Sholler
authors.affiliation: Department of Cardiology, Sydney Children's Hospital, Randwick, New South Wales, Australia.
authors.forename: Christoph
authors.initials: C
authors.lastname: Camphausen
authors.affiliation: Department of Cardiology, Sydney Children's Hospital, Randwick, New South Wales, Australia.
authors.forename: David N
authors.initials: DN
authors.lastname: Murphy
authors.affiliation: 1] Heart Centre for Children, The Children's Hospital at Westmead, Westmead, New South Wales, Australia [2] Department of Cardiology, Sydney Children's Hospital, Randwick, New South Wales, Australia.
authors.forename: Stephen G
authors.initials: SG
authors.lastname: Cooper
authors.affiliation: Discipline of Paediatrics, School of Women's and Children's Health, UNSW Medicine, The University of New South Wales, Kensington, New South Wales, Australia.
authors.forename: Ritik
authors.initials: R
authors.lastname: Kaul
authors.affiliation: Department of Cardiology, Sydney Children's Hospital, Randwick, New South Wales, Australia.
authors.forename: Owen
authors.initials: O
authors.lastname: Jones
authors.affiliation: 1] Heart Centre for Children, The Children's Hospital at Westmead, Westmead, New South Wales, Australia [2] Discipline of Paediatrics and Child Health, Sydney Medical School, University of Sydney, Sydney, New South Wales, Australia.
authors.forename: David S
authors.initials: DS
authors.lastname: Winlaw
authors.affiliation: 1] Discipline of Paediatrics, School of Women's and Children's Health, UNSW Medicine, The University of New South Wales, Kensington, New South Wales, Australia [2] Department of Medical Genetics, Sydney Children's Hospital, Randwick, New South Wales, Australia.
authors.forename: Edwin P E
authors.initials: EP
authors.lastname: Kirk
mesh_terms: D000328:Adult; D001294:Attitude to Health; D002662:Child Health Services; D002669:Child Welfare; D002675:Child, Preschool; D005260:Female; D033142:Genetic Services; D019538:Health Care Surveys; D006330:Heart Defects, Congenital / Q000235:genetics* / Q000601:surgery; D006801:Humans; D008297:Male; D008875:Middle Aged; D016017:Odds Ratio; D010290:Parents / Q000523:psychology*; D010358:Patient Participation / Q000523:psychology; D010465:Perception; D011247:Pregnancy; D012959:Socioeconomic Factors