More than half a million children with special health-care needs will turn 18 this year, the first generation to reach adulthood since sweeping medical advances ensured an unprecedented number would survive congenital conditions that until recently would have killed them.
The influx is straining an already burdened health-care system, and patients and their physicians are feeling the added stress, according to a study by researchers at the University of Florida's Institute for Child Health Policy appearing in the current issue of Pediatrics.
"We are looking at the very beginning of that wave, because this is the first generation to turn 18 since the technology and treatments have allowed them to survive to adulthood," said lead researcher John Reiss, Ph.D., policy and program affairs chief at UF's Institute for Child Health Policy. "That number will grow, and this will put phenomenal pressure on adult medicine." Doctors liken it to a culture clash, as adolescents and families adjust to a very different style of health care.
Young patients must say goodbye to the physicians they trust and who often took a team approach to their care by incorporating the opinions of many specialists to optimize a treatment plan for ailments such as cystic fibrosis, sickle cell disease or congenital heart conditions. Many adult practitioners tend to work more independently and are less familiar with how to manage these complex cases because they haven't routinely encountered them in standard practice. The issue can be costly for patients, both physically and financially, said UF research associate Robert Gibson, Ph.D.
"It is like waking up in France one day," Gibson said. "You don't speak French and you have no idea how to get around the city and you say, 'Wait a
Contact: Denise Trunk
University of Florida