title: Parental knowledge regarding lifelong congenital cardiac care.
abstract: OBJECTIVE
  To assess parental knowledge regarding lifelong congenital cardiac care (LLCCC).
  
  
  BACKGROUND
  National guidelines recommend that nearly 50% of adult survivors with congenital heart disease (CHD) receive LLCCC; the number of adults who receive such care seems far less. Inadequate parental knowledge of LLCCC might contribute to care interruption.
  
  
  METHODS
  In this multicenter study, we administered a questionnaire to parents of children with moderate and complex CHD to assess knowledge of LLCCC.
  
  
  RESULTS
  A total of 500 parents participated; the median age of their children was 10 years (range: 2-18 years). Most parents (81%) understood that their child would need LLCCC, but only 44% recognized that their child's cardiology care should be guided by an adult congenital heart specialist in adulthood. More than half (59%) of the parents stated that their current cardiology team had never spoken to them about LLCCC, but 96% wished to learn more. Variables associated with parental LLCCC knowledge included previous discussions regarding LLCCC, underlying cardiac surgical diagnosis, and level of parental education.
  
  
  CONCLUSIONS
  A substantial number of parents of children with moderate and complex CHD lack knowledge about LLCCC, but almost all of them have a desire to learn more about the care their child will need as an adult.
authors: Department of Cardiology, Children's Hospital Boston, Boston, MA 02115, USA. sue.fernandes@cardio.chboston.org
authors: Susan M
authors: SM
authors: Fernandes
authors: Amy
authors: A
authors: Verstappen
authors: Kathy
authors: K
authors: Ackerman
authors: Elizabeth E
authors: EE
authors: Adams
authors: Cheryl
authors: C
authors: Barton
authors: Petar
authors: P
authors: Breitinger
authors: Stephen
authors: S
authors: Crumb
authors: Kirsten
authors: K
authors: Dummer
authors: Kana
authors: K
authors: Harada
authors: Paul
authors: P
authors: Khairy
authors: Michael J
authors: MJ
authors: Landzberg
authors: Rachel
authors: R
authors: Linstead-Goldsmith
authors: Allison K
authors: AK
authors: Meadows
authors: Jo Ann
authors: JA
authors: Nieves
authors: Arwa
authors: A
authors: Saidi
authors: Masato
authors: M
authors: Takahashi
authors: Jing
authors: J
authors: Zhou
authors: Sonja
authors: S
authors: Ziniel
authors: Roberta
authors: R
authors: Williams
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D007722:Health Knowledge, Attitudes, Practice; D006330:Heart Defects, Congenital / Q000628:therapy*; D006801:Humans; D008134:Long-Term Care; D010290:Parents / Q000193:education*; D011795:Surveys and Questionnaires