Overview of Children with Complex Medical Conditions

Nearly 1 of every 5 children ages birth through 17 years in the United States has a special health-care need (Centers for Disease Control and Prevention [CDC], 2020), which equates to at least 1.2 million children in Texas. The CDC defines special health-care needs to include physical, intellectual and developmental disabilities as well as chronic conditions such as asthma and diabetes. In addition, an estimated 3.2 percent of those U.S. youth—or one in every 31—has complex medical conditions (Pediatrics, 2018). And that number is growing. “Children with complex medical conditions are living longer – many now surviving to adulthood” (Health Progress, 2019). According to an article in the American Academy of Pediatrics (AAP) journal Pediatrics (2018):

Therapies and treatments for many life-threatening diseases and congenital abnormalities that once were universally fatal (are) contributing to a new generation of children whose survival is often both ahead of the scientific evidence to guide their treatment and beyond the capacity of current medical and community systems.

Children and adolescents with complex medical conditions such as congenital heart diseases, genetic conditions, cystic fibrosis, cancer and other conditions may require constant nursing care. They also may need medical equipment such as wheelchairs, oxygen concentrators, gastrostomy tubes and medication ports.

“These children and their families often navigate multiple health care providers and are consistently at high-risk for emergency department visits and hospitalizations” (Children's Hospital of Philadelphia, PolicyLab, 2019).