The Care of Children with Congenital Heart Disease in Their Primary Medical Home
A new policy statement from the American Academy of Pediatrics (AAP), developed in conjunction with the American College of Cardiology's Adult Congenital and Pediatric Cardiology Council, aims to improve patient outcomes and influence the care of children with congenital heart disease (CHD) by harnessing the joint efforts the pediatric cardiologist and the primary care provider (PCP). A team of clinical experts, including representation from the AAP Committee on Practice and Ambulatory Medicine, performed a needs assessment of knowledge gaps, surveyed current practices, reviewed the literature, and developed this evidence-based policy statement with practical recommendations that emphasize PCP and family engagement across the lifespan.
Advances in the repair and palliation of complex CHD have resulted in many patients who survive and are discharged from the hospital to return to their families and their medical homes. Pediatricians always strive to deliver the best medical care, but it may be difficult to keep up with the complexity of these patients' unique health care needs that oftentimes require more effort for effective coordination.
Over the past several years, previously unrecognized familial psychosocial stressors, outcome disparities, extra-cardiac system involvement, therapy complications, nutritional challenges, special immunization needs, infection prevention strategies, neurodevelopmental delays, learning disabilities and many other concerns in children with CHD have all come to light. Although the care of these complex children cannot be simplified, this policy statement aims to serve as a readily available repository of information that the busy PCPs can refer to in the care of these patients in their daily practice.
The policy statement is organized based on a chronologic time-line approach, highlighting anticipated problems and emphasizing the role of the PCP in the management of patients with CHD and their families in various life stages, from pre-natal life to adolescence. Care and support provided by the PCP, as outlined in the following recommendations, are invaluable for improved outcomes throughout the lifespan. Frequent communication, via electronic health records (EHRs) or other means, among all care providers is essential. As pediatric cardiologists, we must partner with the PCPs and strive to open communication lines. EHRs are here to stay let us ensure their accuracy, for the benefit of our mutual patients.
Keywords: Child, Caregivers, Needs Assessment, Patient-Centered Care, Electronic Health Records, Life Style, Heart Diseases, Endocarditis, Pediatrics, Heart Defects, Congenital
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