Until now, there was no blueprint for how to effectively transition pediatric patients with neurologic conditions to adult care: Hard science on the topic is almost nonexistent.
“There is not very much data, yet there is a lot of suggestion that if you do it badly things don’t turn out so well,” said Peter Camfield, MD, a child neurologist and professor emeritus at Dalhousie University in Halifax, Nova Scotia, who has written extensively on the topic (Ann Neurol. 2011;69:437-44 and Epilepsy Curr. 2012;12[Suppl. 3]:13-21). He recalled hearing one story of an adolescent girl who came to see a child neurologist every 6 months, always with her parents. “She had some significant learning disabilities and she didn’t finish high school; she dropped out,” he said. “She was sent to an adult neurologist just with a transfer note and to a nephrologist just with a transfer note.”
The patient never visited the nephrologist. The adult neurologist saw her once, “but she said he was kind of rude and that he wouldn’t see her again,” Dr. Camfield said. “She lived with her boyfriend and eventually at about age 24 she was found dead in bed. She hadn’t taken her medications regularly. The presumption is she died from a seizure. If she had been more prepared for adult medical care, she could have engaged better with the adult neurologist, the kidney part of this thing wouldn’t have been let go, and she presumably would be still alive and making her way.”
In an effort to avoid such tragedies and to define the neurologist’s role in transitioning youth with neurologic conditions into adult care, an interdisciplinary team of child neurologists and other experts spent more than 2 years developing a consensus statement, published online July 27 in Neurology (doi: 10.1212/WNL.0000000000002965). Spearheaded by Lawrence W. Brown, MD, director of the pediatric neuropsychiatry program at The Children’s Hospital of Philadelphia, the consensus statement, “The neurologist’s role in supporting transition to adult health care” is endorsed by the Child Neurology Society, the American Academy of Neurology, and the American Academy of Pediatrics.
Despite broad-based efforts over more than a decade to improve transition of care, such as the Consensus Policy Statement on Health Care Transitions for Young Adults With Special Needs, the Clinical Report: Supporting Health Care Transition from Adolescence to Adulthood in the Medical Home, and the Got Transition Center for Health Care Transition Improvement (a federally funded program located at the National Alliance to Advance Adolescent Health), Dr. Brown expressed his belief that neurologists were unlikely to adopt these recommendations “because they were very hard to put in place, to concretize, and to make practical. We also recognized that child neurology was in many ways behind the eight ball compared to other specialties, at least compared to certain disease-oriented areas such as cystic fibrosis, sickle cell disease, congenital heart disease, and rheumatoid arthritis. These conditions already had attempts to show what the expectations were for the kids and for the doctors, and there were some practical solutions out there.” If transition to adult care is going to be successful, he continued, “it’s not just the neurologist acting in a vacuum, but the neurologist working with the youth and his caregivers as well as with his primary care physician and with other specialists.”
Dr. Brown characterized the new consensus statement as an outline of “common principles that all child neurologists should try to respect” based on a review of the best medical literature and best practices. The first of eight principles contained in the statement recommends that the child neurology team start talking early about the concept of transition to the adult health care system with the youth and caregivers, and document that discussion “no later than the youth’s 13th birthday.”
Mary L. Zupanc, MD, one of the experts who helped author the consensus document, underscored the importance of introducing the notion of transition before the youth turns 13 years of age. Otherwise, “you are playing catch-up all the time,” she said. “Families have to get used to the concept of transition because we have long-term relationships with these individuals and their families. They come to think of us as part of their family. When you first bring up the topic of transition they about have a heart attack, because they can’t imagine a life without including you in it.”
The document’s second common principle recommends that the neurology team assess the youth’s self-management skills annually beginning at age 12. According to the authors, self-management of a medical condition “includes a youth’s understanding of his or her condition and any related limitations, knowledge about and responsibility for his or her own care plan and the need to make informed decisions, and the importance of self-advocacy.”