Parental knowledge regarding lifelong congenital cardiac care

• Published in: Pediatrics (Evanston) 2011-12, Vol.128 (6), p.e1489-e1495
• Main Authors: Fernandes, Susan M, Verstappen, Amy, Ackerman, Kathy, Adams, Elizabeth E, Barton, Cheryl, Breitinger, Petar, Crumb, Stephen, Dummer, Kirsten, Harada, Kana, Khairy, Paul, Landzberg, Michael J, Linstead-Goldsmith, Rachel, Meadows, Allison K, Nieves, Jo Ann, Saidi, Arwa, Takahashi, Masato, Zhou, Jing, Ziniel, Sonja, Williams, Roberta
• Format: Article
• Language: English
• Subjects: Adolescent; Cardiology; Cardiovascular disease; Care and treatment; Child; Child, Preschool; Congenital diseases; Congenital heart defects; Congenital heart disease; Cross-Sectional Studies; Health Knowledge, Attitudes, Practice; Heart Defects, Congenital - therapy; Humans; Knowledge; Long term care; Long-term care of the sick; Parenting; Parents & parenting; Parents - education; Patient outcomes; Pediatrics; Surveys and Questionnaires
• ISSN: 0031-4005; 1098-4275
• DOI: 10.1542/peds.2010-3068

To assess parental knowledge regarding lifelong congenital cardiac care (LLCCC). 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. In this multicenter study, we administered a questionnaire to parents of children with moderate and complex CHD to assess knowledge of LLCCC. 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. 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.