For children reaching adulthood, the excitement of impending independence can be tempered by worries. What career will I choose? How will I support myself? Will I really be able to succeed? But for 17 year-old Jade, the list of concerns is much longer. Jade was diagnosed with spina bifida before she was born, and with adulthood comes the shift from pediatric care to adult care.
The transition of neurology care from pediatric specialists to adult specialists is far more involved than finding a new doctor. As Jade explains, “My doctors literally saved my life.” There are practical concerns as well as emotional concerns that must be considered. Issues like Jade’s led the Child Neurology Foundation to convene a multi-specialty panel that created a consensus statement on the role of the child neurologist in the transition.
The panel recognizes that evidence for successful transition models is lacking, so they encourage further research into the process, with suggested outcome measures for investigators. In the interim, they offer eight principles that should guide the transition from child to adult neurological care.
Discussions about the transition to adult care should begin with the child and caregivers prior to the child’s 13th birthday. This allows ample time for understanding the need for transition. It also allows the care team to work with the child to develop understanding of specific medical conditions and to build self-management and self-advocacy skills.
The panel emphasizes the importance of an “office transition policy outlining the practice’s approach to health care transition.”
An assessment of the child’s self-management skills should occur at 12 years of age and be repeated annually. This includes children with intellectual disabilities, who may be able to develop self-management skills to varying degrees.
Transition planning and discussion occurs annually with the patient and caregivers, preferably during dedicated appointments.
By age 14 the team is discussing the expected legal competency of the child when he or she reaches adulthood. They help build an understanding of the required legal documents that will assure a seamless transition to adult care. This is one of the biggest concerns for Jade’s mom, Tami, who has made a second career of managing this aspect of her daughter’s care. “There are so many little details she needs to understand…insurance, Medicare. How will changes to Obamacare affect things?”
By age 14 a comprehensive transition plan is developed, addressing medical, self-care and self-management needs. It incorporates all necessary individuals—the youth, caregivers, health care providers, community services, legal professionals, educational and vocational professionals. This is ideally coordinated by the healthcare provider that serves as the patient’s medical home.
The pediatric neurology team identifies the neurological component of the plan, ensures it is appropriate, and reviews and updates it annually.
The child neurology team works with the child and caregivers to identify adult providers for specific neurological conditions. This should happen in advance of the time of transfer. Identifying these providers one to two years in advance is beneficial in reducing the stress associated with transfer for the child and caregivers both.
The pediatric neurologist communicates with adult health care providers to assure that the transfer has occurred successfully. This is another area that Tami feels strongly about. “We are the holders of the information, but we aren’t doctors,” she explains. Pediatric caregivers often work closely together and each knows what the other is doing. But as an adult, Jade will have to communicate what each specialist’s plan is to others involved with her care. “Help us know what we need to tell others. Don’t assume we know,” Tami adds.
Whether you are a pediatric or adult neurologist, an understanding of the components of a well-planned transition to adult care offers the patient the best chance at a successful transfer of care. Starting early, communicating frequently with other specialists and with the patient, and listening to the patient’s concerns will smooth the process for all involved.