Caring for Children Who Have Special Health-care Needs: A Practical Guide for the Primary Care Practitioner

Abstract

1. Matthew D. Sadof, MD* 2. Beverly L. Nazarian, MD† 1. *Assistant Professor, Pediatrics, Tufts University School of Medicine; Director, Medical Home Program, Baystate Children's Hospital, Springfield, Mass 2. †Assistant Professor of Pediatrics, University of Massachusetts Medical School, Worcester, Mass Advances in the care of children who have chronic illness have allowed many more children to survive and live longer. Although there are many definitions of chronic illness, the American Academy of Pediatrics (AAP) has endorsed the broad definition proposed by the Maternal and Child Health Bureau (MCHB), which defines children who have special health care needs (CSHCN) as “those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.” (1) For the purposes of this article, we define CSHCN broadly by adopting this MCHB definition. CSHCN does not encompass just those children who have complex disorders or who require technology; children who have attention-deficit/hyperactivity disorder, diabetes, emotional disorders, and autism also can be included in this broad definition. CSHCN are estimated to comprise 13% of the pediatric population and account for 70% of pediatric health-care expenditures. Based on the MCHB definition and the prevalence of CSHCN, all child health clinicians will care for children who have special health-care needs at some time during their practice experiences. Good evidence shows that care for CSHCN delivered in specialized centers can improve clinical outcomes, as measured by hospitalizations, emergency department use, and detection of rare complications. Unfortunately, such speciality centers frequently are confined to academic centers that may be far from the community in which CSHCN and their families reside. The specialized care may be inaccessible to many families because of such barriers as language, culture, distance, cost, and transportation. There also is evidence that some of the basic primary care needs of CSHCN and families may not be well addressed in these subspecialty settings. (2) Primary care physicians and families who find themselves caring …