PA Is Lead Author on Congenital Heart Care Study in Pediatrics
Former
ADVANCE senior associate editor Terri Schaefer, who is now communications manager for the
Adult Congenital Heart Association, let me know recently that Susan M. Fernandes, MHP, PA-C, a physician assistant in the cardiology department at Children’s Hospital in Boston, was the lead author of a study published recently in the journal
Pediatrics.
The article, “Parental Knowledge Regarding Lifelong Congenital Cardiac Care,” was published online on Nov. 28 in the American Academy of Pediatrics publication.
Among Fernandes’s coauthors, all writing on behalf of the Adult Congenital Heart Association and the Adult Congenital Cardiac Care Associate Research Network, were Petar Breitinger, PA-C, MPAS, in the departments of pediatrics and internal medicine at the University of Florida, Gainesville; Stephen Crumb, MSN, ACNP-BC, in the cardiology department at Nationwide Children’s Hospital in Columbus, Ohio; and Jo Ann Nieves, MSN, ARNP, PNP-BC, in the pediatric cardiology division of Miami Children’s Hospital in Miami, Florida.
In the multicenter study, Fernandes and colleagues administered a questionnaire to parents of children with moderate and complex congenital heart disease to assess their knowledge of lifelong congenital cardiac care (LLCCC). While national guidelines recommend that nearly 50% of adult survivors with congenital heart disease receive LLCCC, the number of adults who receive such care seems to be far less. Inadequate parental knowledge of LLCCC might contribute to care interruption, the authors reasoned.
From the article’s abstract:
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.
The PA-led researchers conclude that a substantial number of parents of children with moderate and complex congenital heart disease 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.