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INTRODUCTION AND EPIDEMIOLOGY

Children with special healthcare needs (CSHCN) have or are at increased risk for chronic physical, developmental, behavioral, or emotional conditions and require health and related services of a type or amount beyond those required by children generally.1,2 This group of children encompasses a wide spectrum of medical complexity, functional limitations, and resource utilization.3,4 A subset of the CSHCN population, children with medical complexity have substantial healthcare service and resource needs for their chronic conditions.4,5 Their response to illness and trauma may be unpredictable compared with the normal pediatric patient, sometimes leading to a rapid and unexpected deterioration. This requires a personalized approach that addresses their special needs and chronic medical problems in addition to the emergency medical condition at hand. This unique response to illness and injury accounts for the majority of pediatric hospital days and deaths in this group.4,6 CSHCN is a growing population, accounting for 15% to 18% (11.2 million) of children in the United States7,8 and for 40% to 80% of all pediatric healthcare utilization and costs.7,9,10,11 These trends are largely due to increased survival of premature infants and improved medical or surgical treatment of conditions that were once terminal.5,6 Compared to typical children, children with chronic conditions tend to be older, male, and from white racial or ethnic groups.8,10-13 The clinical spectrum of CSHCN conditions is diverse, and complex medical devices are often required for care (Tables 148-1 and 148-2).10-12,14-17 Because of the increasing prevalence of this patient population and their high rate of healthcare utilization, emergency medical practices must adapt to meet the needs of this complex group.18

TABLE 148-1Congenital or Developmental Disorders and Associated Medical Conditions19,20

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