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.
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: Susan M Fernandes; Amy Verstappen; Mathieu Clair; Mary Rummell; Deena Barber; Kathleen Ackerman; Kirsten Dummer; Joseph C Mares; Mary M Cannobio; Leigh C Reardon; Jin Long; Stephen Crumb; Ami Bhatt; Masato Takahashi; Paul Khairy; Roberta Williams; Michael J Landzberg; Tabitha Moe; Disty Pearson Journal: Pediatr Cardiol Date: 2019-07-31 Impact factor: 1.655
Authors: Susan M Fernandes; Joanne O'Sullivan-Oliveira; Michael J Landzberg; Paul Khairy; Patrice Melvin; Gregory S Sawicki; Sonja Ziniel; Lisa B Kenney; Katharine C Garvey; Amy Sobota; Rebecca O'Brien; Peter A Nigrovic; Niraj Sharma; Laurie N Fishman Journal: J Pediatr Rehabil Med Date: 2014
Authors: Giovanni Biglino; Claudio Capelli; Jo Wray; Silvia Schievano; Lindsay-Kay Leaver; Sachin Khambadkone; Alessandro Giardini; Graham Derrick; Alexander Jones; Andrew M Taylor Journal: BMJ Open Date: 2015-04-30 Impact factor: 2.692