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INTRODUCTION

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The transition process and appropriate transfer of care are particularly important for children with complex medical care needs. The American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians-American Society of Internal Medicine highlighted this in their original consensus statement on healthcare transitions for young adults with special healthcare needs, published in Pediatrics in 2002, which stated the goal of transition as “maximiz[ing] lifelong functioning and potential through the provision of high-quality, developmentally appropriate health care services that continue uninterrupted as the individual moves from adolescence to adulthood.” Cooperation between various healthcare practitioners in the pediatric and adult spheres is needed to accomplish the goal of healthcare transition in a way that is family-centered, compassionate, coordinated, and comprehensive.

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Children and youth with special healthcare needs (CYSHCN) are broadly defined in the United States as “those who have 1 or more chronic physical, developmental, behavioral, or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally.” The population of CYSHCN continues to grow as scientific advances for many pediatric chronic conditions increases longevity for even the most complex and medically fragile childhood conditions. Today, an estimated 18.4% of US youth ages 12 to 18 meet this broad definition of CYSHCN, with approximately 90% currently reaching adulthood. The need for structured transition planning of this high-risk population has been a focus of federal agencies for over a decade, and is specifically addressed in the Healthy People 2020 campaign. Despite this attention, the most recent National Survey of Children with Special Health Care Needs in 2009–2010 found no discernible improvements in transition outcomes since the 2005–2006 national survey. The survey utilizes a composite of 4 measures: transition to an adult provider, changing healthcare needs, maintaining health insurance coverage, and taking increased responsibility for self-care.

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Certainly, medical advancements over the last century have increased the survival into adulthood of individuals with various chronic conditions, such as congenital heart disease, sickle cell disease, cystic fibrosis, and insulin-dependent diabetes mellitus. Regrettably, these same populations have been noted to experience increased morbidity and mortality at the time of transition from pediatric to adult care. A small subset of CYSHCN, children with medical complexity (CMC), account for up to one-third of overall healthcare spending for children and an increasing percentage of pediatric hospitalizations and recurrent hospital admissions. Yet very little is known about this population once they arrive in the adult healthcare system. Currently, a consistent definition for this heterogeneous subgroup does not exist, but it is clear that CMC have numerous ongoing and complex medical care services that go unmet.

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DEFINING TRANSITION FOR CHILDREN WITH MEDICAL COMPLEXITY

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The transition of a child with medical complexity includes various factors that should be considered and addressed by the medical home, a concept that embraces the foundation of patient- and family-centered care and supports ...

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