TY - JOUR
T1 - Parental knowledge regarding lifelong congenital cardiac care
AU - Fernandes, Susan M.
AU - Verstappen, Amy
AU - Ackerman, Kathy
AU - Adams, Elizabeth E.
AU - Barton, Cheryl
AU - Breitinger, Petar
AU - Crumb, Stephen
AU - Dummer, Kirsten
AU - Harada, Kana
AU - Khairy, Paul
AU - Landzberg, Michael J.
AU - Linstead-Goldsmith, Rachel
AU - Meadows, Allison K.
AU - Nieves, Jo Ann
AU - Saidi, Arwa
AU - Takahashi, Masato
AU - Zhou, Jing
AU - Ziniel, Sonja
AU - Williams, Roberta
PY - 2011/12
Y1 - 2011/12
N2 - 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.
AB - 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.
UR - https://www.scopus.com/pages/publications/83155176175
UR - https://www.scopus.com/pages/publications/83155176175#tab=citedBy
U2 - 10.1542/peds.2010-3068
DO - 10.1542/peds.2010-3068
M3 - Article
C2 - 22123874
AN - SCOPUS:83155176175
SN - 0031-4005
VL - 128
SP - e1489-e1495
JO - Pediatrics
JF - Pediatrics
IS - 6
ER -