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INTRODUCTION

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Adults with congenital heart disease now outnumber children with this malady. They constitute a growing population of survivors, with increasingly complex treatment requirements for their heart disease. Over the past two decades, the spectrum of complexity for adult congenital heart disease (ACHD) patients has evolved from late primary repairs of patients with simple lesions—including coarctation, patent ductus arteriosus, septal defects, and tetralogy of Fallot—to nth time reoperations on survivors of complex multistaged palliations. Significant efforts to define the optimal program resources necessary to effectively treat ACHD patients have been made worldwide,1 yet many congenital heart patients continue to suffer from poor continuity of care as they enter adulthood. This chapter will describe several salient treatment strategies for adult patients undergoing congenital heart surgery.

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REDUCING CUMULATIVE THERAPEUTIC TRAUMA

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The optimal venue for ACHD treatment is unknown, and it is fair to say that no two programs are the same. The need for a coordinated and comprehensive programmatic strategy for care has been well described, and should encompass not only the lifetime of a generation of patients with congenital heart defects from fetal to adult life, but also the health of pregnant mothers with congenital heart disease who will give birth to a new generation.2 Pregnant mothers with fetal diagnoses of congenital heart disease may be asked to undergo invasive intrauterine procedures to palliate their fetal child’s heart, thus creating a new group of adult patients dealing with the trauma of congenital heart care.3

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Our congenital heart program philosophy is to reduce the cumulative trauma of care for each patient with congenital heart disease over their lifetime. To achieve this, we discuss each adult patient referred to our program for surgery or intervention in a combined conference with participation from adult and pediatric interventional cardiologists and surgeons, dedicated cardiac intensivists, cardiac anesthesiologists, cardiac imaging specialists, and the cardiac nursing, pharmacy and social work teams. Treatment options are selected so that the least traumatic form of effective therapy is chosen as the initial approach. Failure to achieve a good result leads to an escalation to the next least traumatic option. As an example, a patient with a secundum atrial septal defect (ASD) would be put forward for device closure, and if this failed, the patient would then be given the option of a minimally invasive surgical repair.

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INFORMATION SYSTEMS

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Adult congenital heart disease patients with complex lesions often have dense medical histories, stored in multimedia formats, which expose the weaknesses of current paper and electronic medical record (EMR) systems. Increasing utilization of EMRs by medical teams, and personal health records (PHRs) by patients and families, has been demonstrated to improve outcomes in some patients with chronic disease.4 However, pediatric heart patients and their families often have not been educated about their disease, and what to expect as they transition to adulthood. The PHR ...

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