A65-lb., 25-year-old, male cerebral palsy (CP) patient with pneumonia arrives at your Children’s Hospital via ambulance. Although chronologically this patient is an adult, in many ways he’s still a child, and the parents told the paramedics that they’ve always taken their son to Children’s. You’ve been the treating physician during the patient’s frequent hospital stays. Is Children’s Hospital still the best destination for this patient? Will the family’s insurance still cover an admission at Children’s?
During the hospital stay, the patient has complications. He has to be intubated. IV antibiotics need to be continued for a course after hospital discharge. A long recovery is expected. Is it time for the family to consider discharge to a long-term care facility rather than home? Are there any long-term care facilities in the area that accept young adult CP patients?
As the treating pediatric hospitalist, what is your role in helping this patient and his family transition from pediatric care to an adult-care medical home?
Approximately 8.6 million children in the United States age 10–17 have a disability, according to the Adolescent Health Transition Project, which is housed at the Center on Human Development and Disability (CHDD) at the University of Washington, Seattle. Of these, 16% (or 1.4 million) experience limitations in their activities and will likely have difficulty making the transition to adult healthcare.1
Given enough time in the profession, every pediatric hospitalist will face the challenge of transitioning patients from child-centered to adult-oriented healthcare systems. The good news: Medical advances have made it increasingly possible for children who once would have died in childhood to survive into adulthood.
Example: One in 2,500 children is born with cystic fibrosis (CF); however, with the recent, unprecedented increase in the success of diagnosis and treatment modalities for the pulmonary component of CF, the estimated median survival age for those born in the 1990s is now 40.2 As of the year 2004, 41.8% of the 22,301 patients with CF were 18 or older.3 In fact, each year nearly 500,000 children with special healthcare needs reach adulthood, and 90% of children with a chronic illness and/or disability now survive to adulthood.4,5
The bad news: Many physicians whose practices focus on adults aren’t familiar with disease processes, such as CF, that have historically been considered pediatric illnesses.
For patients with chronic physical and medical conditions—particularly for those who are medically fragile and/or technology-dependent—the transition can prove especially difficult. And pediatric hospitalists in children’s hospitals face different challenges than those in facilities that admit patients of all ages. One thing remains the same, though, the goal: to provide uninterrupted, coordinated, developmentally appropriate healthcare.
There are several good reasons for patients to be transitioned from pediatric care to adult care. First, as patients age medical issues develop that are beyond the sphere of pediatricians. In CF, for example, diabetes and biliary tract problems occur with greater frequency in adults. However, because so few CF patients historically survived to adulthood, few physicians who care for adults learned about the disease. Thus, the pediatricians who cared for CF patients continued to do so, leading to situations in which 30- and 40-year-olds have been hospitalized with children. But is that truly appropriate?
Adult patients may have high blood pressure, gynecologic issues, osteoporosis, or other problems the pediatrician may not be prepared to deal with. Example: A primary care pediatrician has been the “medical home” for a small, cerebral palsy patient since she was 10. She’s now 25. If she presents with a breast mass, will the pediatrician pick up on the condition adequately? Will they know where to send the patient?