Abstract
Background: Congenital heart disease (CHD) affects approximately 1% of all live births today. With improvements in diagnostic, medical, surgical, and interventional procedures, 85% or more of all infants with CHD will reach adulthood. The number of adults living with CHD has been estimated to exceed 1 million and now exceeds the number of pediatric CHD patients. Because residual problems following intervention for congenital heart lesions can present during the adult years and complicate the well-being of these patients, ongoing care is warranted. Adult care providers have a limited knowledge of the complexities of CHD. The American College of Cardiology recommends the establishment of adult CHD clinics with both pediatric and adult cardiologists. Although our clinic is located in a pediatric hospital, little attention has been placed on where these clinics should be located-an adult setting or a pediatric setting. We sought to determine the adult CHD patient's perspective on being seen in a pediatric setting.
Objective: The objective of the study was to determine the perspective of adults with CHD receiving follow-up care in a pediatric setting.
Methods: A pilot 11-question anonymous patient satisfaction survey with no personal identifiers and no diagnoses was sent to all patients who had attended the adult congenital heart disease clinic at our pediatric hospital medical center during a 2-year period.
Results: From our respondents, 96% did not have any concerns with being seen in a pediatric setting for adult congenital heart care, and 98% would recommend our clinic to other patients.
Conclusion: Care for the adult with CHD involves multiple care providers. The most important finding from the patient's perspective is knowledge of the complexities of congenital heart lesions and possible future complications. There was little impact from being seen in a pediatric hospital setting.