Pediatric practice has changed from the care of acutely, sometimes fatally, ill children to the care of two major subpopulations. Today, the vast majority of youngsters receive services principally for health care maintenance and for the treatment of relatively minor intercurrent illnesses and injuries. However, others have serious ongoing congenital or acquired health conditions that radically alter the type of pediatric care they need. These children require a wide range of services for which many pediatricians have received little, if any, formal training. This paper is intended to serve as a guide for general pediatricians and subspecialists, who face the growing demands for this special care.

Definition and Incidence

Data on the exact number of children who have a chronic physical disorder are poor. This is a result of several factors: the focus on subdividing medical conditions into specific diagnostic groupings, the enormous range and diversity of conditions affecting children, the large number of relatively rare disorders, and the imprecise definition of chronic illness. Published estimates range from 5% to more than 30%. The lower number is based on identifying mainly those who have ongoing major conditions and disabilities; the higher estimates come from surveys that reflect parental report of any condition lasting more than a few months.

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