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The statement also recommends phased transition planning at least annually beginning when the youth is 13 years of age. Topics to be discussed at such planning sessions range from the youth’s medical condition and current medications to genetic counseling and issues of puberty and sexuality. The validated Transition Readiness Assessment Questionnaire can be used as well (Acad Pediatr. 2014;14[4]:415-22).
Another principle contained in the consensus statement calls for a comprehensive transition plan by the time the youth is 14 years of age, ideally coordinated by the youth’s primary care provider in collaboration with the youth, caregivers, other health care providers, school personnel, vocational professionals, community services providers, and legal services regarding all aspects of health, financial, and legal care. It tasks the child neurology team with three responsibilities toward the comprehensive care plan: “assuring that an appropriate plan exists” and is created in partnership with the youth and family; “identifying the professional(s) with primary responsibility for overseeing and updating the entire transition plan,” and “providing and updating the neurologic component to this plan – including the ‘transfer packet,’ ” which contains important medical and social information.
In 2011, Dr. Zupanc, division chief of pediatric neurology at Children’s Hospital of Orange County in Orange, Calif., created a multidisciplinary clinic for epilepsy patients that includes nurse practitioners, registered nurses, a pharmacist, a dietitian, a social worker, a neuropsychologist, and a child psychiatrist. When Dr. Zupanc addresses the notion of transition with patients and their families for the first time, it’s not uncommon for her to be accompanied by the social worker and the neuropsychologist, “which I find helpful because parents may start to ask questions about guardianship,” she said. “Many of these parents do not even realize that there has to be an appointed guardian at age 18. We usually seek verification of competency via neuropsychometric testing or school evaluations. This information has to go before a judge to decide whether or not the patient is capable of taking care of himself/herself or if there should be an appointed guardian, typically one or both parents.”
Dr. Zupanc goes on to tell patients and their families that transition of care is a process that’s going to occur over the next 6-8 years. “Some of the patients don’t transition at age 18 years, because they are covered by California Children’s Services until age 22 years,” she said. The age of transition may vary from state to state, depending on insurance coverage and other issues. “Parents and patients get used to the idea that the transition isn’t going to happen tomorrow,” she said. “We explain the whole process. We let them know that we will help them. We also mention that we have adult provider colleagues in the community who are very knowledgeable about epilepsy or their child’s genetic syndrome. We partner with these colleagues, many of whom we have identified over time as willing to take our neurologically complex patients. As the transition process proceeds, we develop a transition packet of important medical information and social information. We will personally have conversations with the physician to whom we are transitioning care. Sometimes, our colleagues at University of California, Irvine, come over to our clinic before the final hand-off, so that the adult provider and the pediatric provider can meet together with the parents and patients in the same room. To us, that is the ideal situation. In this way, both the patients and the parents do not feel as if they are being abandoned.”
Dr. Zupanc, professor of pediatrics at the University of California–Irvine School of Medicine, said that a chief barrier to effective transition of care for pediatric patients with complex neurological problems is identifying clinicians who are willing to accept them into their practice. For example, many young patients with intractable epilepsy have significant concomitant cognitive issues and behavioral issues and/or autistic spectrum disorder. “If you look at surveys of adult providers, they feel enormously uncomfortable and uneducated about autistic spectrum disorder. They do not want to touch these young adolescents/adults,” Dr. Zupanc said. “They’re willing to take a piece of their care but not the entire package, which is problematic.”
The way Dr. Camfield sees it, neurologists have a moral obligation to play an active role in transitioning pediatric patients to adult care. “In many ways, it’s the No. 1 issue for tertiary care pediatrics now: What happens to young people in adulthood; what kind of citizens they turn out to be and how we help that to take place,” said Dr. Camfield, who helped write the consensus statement. “It’s no longer just enough to think, ‘as your child gets to be 16, 17, or 18, that’s it. We’re finished. Our job is done.’ That doesn’t make sense to me.”