Forum Session Emphasizes Importance of Continuity of Care

Continuity of Care—one of the many patient-centered topics presented during NINDS’s nonprofit forum—explored transitional care, which is the process beginning in early adolescence to prepare children with chronic illness and their families for adult care.

“From the perspective of the young adult, it is a challenge to shift from a long-standing family-based medical relationship to what can be an alien adult medical system that is individual-based, often narrowly focused and with fewer supports like social workers, therapists or special education resources,” said Dr. Lawrence Brown of Children’s Hospital of Philadelphia (CHOP). 

Brown focused on the neurologist’s role in transition. He discussed barriers to as well as core elements of good health care transition.

“Little attention was ever directed on what we as pediatric specialists and primary care providers could do to ensure that all youth—especially those with special health care needs—would reach their full potential in terms of knowledge of their medical condition, ability to manage their condition and enjoy the best quality of life,” he said. “Only in recent years has transition been understood as a process that takes many years of preparation.”

Ten years ago, Brown started a program to help families whose children with Lennox Gastaut syndrome, a severe form of epilepsy, were aging out of CHOP. The program grew to include all adolescents and youth with neurological disorders and became a national project later adopted by the Child Neurology Foundation (CNF). 

After organizing a consensus panel that published transition guidelines for youth with neurological disorders, CNF looked for ways to integrate the process into daily practice and to help adolescents understand the importance of preparing for adulthood. This led them to develop resources for neurologists on the CNF web site, projects to incorporate transition into the electronic medical record and a comic book titled Understanding Transitional Care in Epilepsy.  

Programs like CHOP’s are being developed throughout the United States and Canada, but creating a standard plan remains a challenge. 

“Clearly, there is no one size fits all,” Brown concluded. “The needs within neurology are as variable as those across other specialties. For example, transition preparation for a youth with Duchenne dystrophy is very different than for one with tuberous sclerosis, and what is needed for sickle cell disease is different than for cystic fibrosis.”