Continuity of Care for Those with Special Health Care Needs

Congenital conditions resulting from genetic, environmental, or a combination of etiologies, whether diagnosed pre- or postnatally, include abnormalities of the cardiovascular, digestive, endocrine, exocrine, integumentary, muscular, nervous, reproductive, respiratory, skeletal, and urinary systems, coupled with myriad syndromes involving one or more of these systems.

Those afflicted need care throughout life, from prenatal, if diagnosed before birth, through adulthood. Even though most conditions are amenable to medical-surgical therapy, almost none are totally cured; thus, they need for lifetime care continuity.

Initial and subsequent care involves multispecialty inpatient and outpatient services. Initially, affected infants and children will likely be cared for at a children’s hospital by children’s specialists and subspecialists. However, problems often begin with care continuity for those 18 and older.

Congenital cardiovascular malformations are among the most common congenital problems.? From the mid-20th century to now, survival rates into adulthood for many congenital heart disease conditions have gone from essentially 0% to nearly 100%. Similar figures can be quoted for other congenital conditions. Thus, the need for care beyond 18 years of age is now essential; nevertheless, patients older than 18 with congenital heart disease and myriad other conditions are often lost to follow-up in pure children’s health care systems. Most of these patients are not served well in pure adult care systems.

Based on the premise, popularized by the 19th-century father of American pediatrics Dr. Abraham Jacobi [1], that “children are not small adults,” early siloed children’s hospitals began springing up in large cities in the late 19th century. These “free-standing children’s hospitals” rapidly became the gold standard for inpatient pediatric care by the mid-20th?century, initially for those primarily with untreatable infectious diseases, most of which have now been conquered. With time, pediatric organ system subspecialties emerged, and pediatric cardiology was the first to offer certification in 1961 [2].

Care for those with special health care needs has been a resounding success over the recent several decades, with almost all patients now living into adulthood. However, discontinuity of care is typical after 18 years of age because of the usual system of separate pediatric and adult hospitals and other facilities. Systems with seamless continuity of care for all ages, from prenatal to adults, should be developed, providing specialized care for all those with special health care needs regardless of age. ?Seamless care is based on there being no geographic distance between centers for pediatric and adult care, no administrative burdens or other potential siloing issues such as academic department issues or cost/revenue-center competition between prenatal/neonatal/pediatric/adult care for patients with special health care needs. ?

The 19th century Dr. Abraham Jacobi axiom of “children are not small adults” should be discarded in favor of care continuity for all those with lifelong special health care needs; for example, a fetus diagnosed with a univentricular heart needs care continuity from the diagnosis to adulthood, undertaken in a seamless, continuous care system, as do all patients born with special health care needs.

1) Jacobi A. in Transactions of the American Pediatric Society (ed. Watson, WP) pages 6–17. J.B. Lippincott, Philadelphia, PA, 1890.

2) https://www.abp.org/content/history-abp