Nicholas “Nick” Jensen, of Panama City, Florida was born with Ebstein’s anomaly, a complex form of a congenital heart disease. Shortly after he was born, physicians advised that his parents take him to pediatric cardiologists at the UF Health Shands Children’s Hospital for further evaluation.
That decision set him on a health care journey that continues to this day. Now 25, Nick has been a patient of the UF Health Congenital Heart Center virtually his entire life.
He is among a growing number of patients nationwide who face the challenges of transitioning from pediatrics to adult care. In recent years, physicians at UF Health and other health centers have been establishing programs to assist patients who decades ago would not be expected to live into adulthood.
In Florida, there are more than 500,000 youths with special health care needs, according to the Florida Health and Transition Services program. A recent report on National Public Radio revealed that nationwide, there are more adults than children living with these potentially fatal
In the 1970s, for instance, less than 30 percent of youths with spina bifida reached age 20. Today, more than 80 percent of those born with the disease reach adulthood. There have been similar remarkable increases in survival
for other serious disorders such
as cancer, diabetes, sickle cell, muscular dystrophy and
“This is the so-called medical miracle promised to our parents and grandparents,’’ said Patrick Burke, M.D., a pediatrician in Madera, California, who heads a new transitional care program at Valley Children’s Healthcare.
Along with their physical challenges, these patients face a number of hurdles in their transition, such as obtaining insurance coverage, a lack of education about their condition, and relocation. Youth with disabilities are much less likely than their nondisabled peers to finish high school, pursue postsecondary education, find a job or live independently.
Clinics are developing new strategies to help these young patients be successful as adults, such as giving nonpediatric doctors more training or bringing in transitional specialists to connect young adults with
Over the past 15 years, for example, UF Health’s transition of care team for cystic fibrosis has tried different approaches. The most recent innovation has been a joint transition clinic, where older teens meet the adult group, with the comfort of their familiar pediatric team present. After this visit, they may choose to go directly to the adult program or they may choose to return to pediatrics and attend a few more transition visits.
“As soon as children can understand and converse with their medical team, we try to include them in the conversation about their diagnosis and the medication and treatment that are associated with it,” said Susan Chauncey Horky, LCSW, a UF Health social worker who has worked with people with cystic fibrosis and their families for a number of years.
“We teach them more and more as they get older,’’ she said. “As they become developmentally ready, we help them to take ownership of their own health