Knowledge of Life-Long Cardiac Care by Adolescents and Young Adults with Congenital Heart Disease.

National management guidelines recommend that patients with moderate and complex congenital heart disease (CHD) receive life-long cardiac care (LLCC), guided in adulthood by an adult congenital heart disease (ACHD) specialist. However, the percentage of adult CHD patients who receive such care is quite low. Inadequate knowledge regarding LLCC may contribute to care interruption. We, therefore, sought to determine the knowledge of adolescents and young adults regarding LLCC. In this multi-center study, we administered a survey to patients 13-20 years of age with surgically repaired congenital heart disease. We assessed the understanding of both their need for LLCC and awareness of the type of recommended care providers. A total of 290/302 (96%) patients approached in the outpatient clinic setting (10 centers) agreed to study participation; mean age was 16.3 ± 2.3 years; patients were 62% male. While the need for LLCC was recognized by 78% of subjects, only 37% understood that an ACHD specialist in adulthood should guide this care. Only 37% of respondents stated that their current cardiology team had spoken to them about LLCC, but 90% wished to learn more. A substantial number of adolescents and young adults with moderate and complex CHD lack adequate knowledge about LLCC, but most have a desire to learn more about the type of care they will require in adulthood. Transition education/assessment ensuring successful transfer to adult-oriented care for this population should emphasize the importance of LLCC.

Parental knowledge regarding lifelong congenital cardiac care.

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.

Quality outcomes of ACHD patients undergoing cardiovascular procedures and hospital admissions in a free-standing children's hospital.

OBJECTIVES: Describe quality outcomes of adults with congenital heart disease (ACHD) undergoing cardiovascular procedures and admissions in a free-standing children's hospital with a multi-disciplinary ACHD program and compared with pediatric outcomes. BACKGROUND: A challenge for the U.S. healthcare system is where to treat the >1 million ACHD patients (pts): adult hospitals without CHD care, or pediatric hospitals without adult services. METHODS: We reviewed all CHD pts ≥ 18 yrs of age from 2002-2007. Procedural and hospital related morbidity and mortality were recorded. ANOVA and t-test compared adult with pediatric pts. RESULTS: Overall, 782 pts, mean age of 29.8 ± 9.9 yrs, encountered 1490 procedures/admissions. For 178 cardiac surgeries (72% reoperations), mortality was 1.8% and complication rate was 7.3%. There was 0% mortality for 412 cardiac catheterizations, 311 electrophysiological procedures, 401 transesophageal echocardiograms (TEE), 244 exercise tests (ETT) and 54 medical admissions. Major adverse event rate was 0.6% for cardiac catheterization and electrophysiological procedures. No adverse events occurred during TEE and ETT. Only 4 pts required transfer to an adult institution (0.25%). There was no significant difference in mortality or adverse events between pediatric and adult CHD pts, p>0.05. CONCLUSIONS: The optimal setting to provide ACHD care remains a complex issue. Our study is the first to demonstrate 1) a low incidence of morbidity and mortality for ACHD pts undergoing cardiovascular procedures or admissions at a free-standing children's hospital, 2) outcomes comparable to pediatric CHD pts. Future models incorporating ACHD programs within pediatric heart centers should be considered to care for this complex population.