A new consensus statement offers guidance to neurologists on how to facilitate a successful transition from pediatric to adult care for patients who are expected to live into adulthood. The statement, funded in part by Eisai, Inc., was recently published online in Neurology.1
Several studies have reported disparities in the transition of care in adulthood. In one study based on questionnaires completed by parents of youth aged 12-17 with autism, less than 15% of patients had received transition services, and only a quarter of providers had discussed issues pertaining to adult care with their patients.2 In addition, caregivers reported that such discussions were unnecessary, suggesting that they may not understand the importance of transition services.
“From the perspective of the child neurologist, we have a close relationship with the patient – often over many years – that would be hard to duplicate,” said Lawrence W. Brown, MD, FAAN, a pediatric neurologist at The Children’s Hospital of Philadelphia, and one of the authors of the statement. “We have been with them through the diagnosis, the management challenges, and the turbulence of adolescence,” he told Neurology Advisor. For the patients and their caregivers, any kind of change can be difficult, and it can be particularly overwhelming to shift from a family-centered pediatric model to an individual adult care model.
A survey of neurologists in Quebec, Canada, revealed that half of respondents did not think adult neurologists had sufficient training to address the adult needs of patients with childhood onset disorders. In fact, “60% of pediatric neurologists reported having difficulty finding an adult provider for their patients,” according to the paper.3 For the adult neurologist “who has to ‘pick up the pieces,’ there is too often an unprepared and unwilling patient, expectations they cannot meet, and disorders and treatments they never learned about in training,” said Dr Brown.
In their 2011 guidelines on supporting the transition from pediatric to adult medical care, the American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians called for specialists to develop guidelines addressing their population’s specific needs. In 2014, the Child Neurology Foundation convened an interdisciplinary panel of experts to create such a document.
“What prompted the statement was the recognition that we as child neurologists were not doing as much as we could to prepare adolescents and young adults, as well as their caregivers, for the responsibilities of self-management of their neurological disorders and for adulthood in general,” Dr Brown explained. “We knew there were barriers, but we didn’t know all of them, and we knew there were solutions that others had discovered but we didn’t know how applicable they were to the issues we faced, especially when they included intellectual disability,” he said.
Dr Brown and the other panel members worked together to distill the issues into as few as possible without omitting important points, based on relevant research and their expert opinions. The final result was a consensus statement proposing 8 principles to guide transition models and define the neurologist’s role in the process. These points are summarized below.
The child neurology team should:
- Discuss future transition expectations with patients and caregivers by the time of the child’s 13th birthday at latest. This discussion should introduce topics such as changing health care needs, health insurance retention, and future expectations of the patient to assume responsibility for their medical needs as much as possible.
- Conduct an annual assessment of the patient’s self-management skills starting at age 12, including those with intellectual disabilities. “A youth’s eventual ability to manage his or her condition in adulthood is central to independent living and employment,” noted the authors.
- Discuss transition planning and transfer readiness with patients and caregivers each year starting when patients are 13 years old. These discussions should take place at dedicated transition appointments, ideally, or at least during non-acute visits. Validated tools such as the Transition Readiness Assessment Questionnaire can be used to guide discussions and planning.
- Begin discussions regarding the patient’s expected legal competency by the time the patient is 14 years old. If expected competency is unclear, it should be reevaluated annually. Noting the often complicated and time-consuming process of establishing legal guardianship, the authors stated that addressing the issue early on can help patients navigate the legal system before the patient reaches adulthood.
- Assure that a multidisciplinary transition plan is developed that addresses concerns related to health care, finances, legal issues, employment, housing, and more. “Ideally, all children will have a pediatrician or family practitioner, acting as a medical home, to coordinate and maintain the comprehensive transition plan,” wrote the authors, and “the child neurology team reviews and assures the adequacy of the transition plan annually.”
- Develop and make annual updates to the neurologic component of the transition plan, which should include information such as a summary of the patient’s health care issues, their goals for adult treatment, and the planned timing of transition to an adult neurologist, for example.
- Collaborate with patients and caregivers to identify an adult provider before the expected time of transfer. If such a provider is not identified before the planned transfer time, the child neurology team should maintain responsibility for ensuring the continuation of adequate care.
- Communicate directly with the chosen adult provider to ensure that the transfer has been made and care is established with the new provider, who may be more open to such transfers if the pediatric provider assures them of direct access for consultation should the need arise.
Though each of the principles is vital to the smooth, successful transition of care, Dr Brown said that “perhaps the most important principle is the first; that transition is an expectation, that it needs to be built in to the practice of child neurology, and that it takes place over the course of adolescence rather than a single moment of time at the transfer from pediatric to adult care.”
- Brown LW, Camfield P, Capers M, et al. The neurologist’s role in supporting transition to adult health care: a consensus statement. Neurology. 2016; 87:1–6.
- Cheak-Zamora NC, Farmer JE, Mayfield WA, et al. Health care transition services for youth with autism spectrum disorders. Rehabil Psychol. 2014; 59(3):340-8.
- Oskoui M, Wolfson C. Treatment comfort of adult neurologists in childhood onset conditions. Can J Neurol Sci. 2012; 39(2):202-5.