Parental knowledge regarding lifelong congenital cardiac care

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...

Full description

Saved in:
Bibliographic Details
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
Citations: Items that this one cites
Items that cite this one
Online Access:Get full text
Tags: Add Tag
No Tags, Be the first to tag this record!
Description
Summary: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.
ISSN:0031-4005
1098-4275
DOI:10.1542/peds.2010-3068