Parental knowledge regarding lifelong congenital cardiac care

Susan M. Fernandes, Amy Verstappen, Kathy Ackerman, Elizabeth E. Adams, Cheryl Barton, Petar Breitinger, Stephen Crumb, Kirsten Dummer, Kana Harada, Paul Khairy, Michael J. Landzberg, Rachel Linstead-Goldsmith, Allison K. Meadows, Jo Ann Nieves, Arwa Saidi, Masato Takahashi, Jing Zhou, Sonja Ziniel, Roberta Williams

Research output: Contribution to journalArticlepeer-review

22 Scopus citations


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.

Original languageEnglish (US)
Pages (from-to)e1489-e1495
Issue number6
StatePublished - Dec 2011

All Science Journal Classification (ASJC) codes

  • Pediatrics, Perinatology, and Child Health


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