Neurology Today Conference Reporter: CNS Annual Meeting

Friday, October 28, 2016

Parameters Set for Transitioning Children to Adult Neurology


What can child neurologists do to ease the transition of their pediatric patients to adult neurologic care? A panel of experts convened by the Child Neurology Foundation has developed a consensus statement that includes eight principles that define the child neurologist's role in a successful transition process, as well as a series of case vignettes that demonstrate how to apply these principles for youth with a variety of neurologic conditions.

The panel, comprising child neurologists, child neurology nurses, adult neurologists, rehabilitation specialists, patients, and family members of neurology patients, worked over two years to develop the consensus statement, which was published in the August 23 edition of Neurology.

Among the principles, the panel said the child neurology team should initiate a discussion with the caregiver(s) and their patient — no later than the youth's thirteenth birthday — about the future transition to the adult health care system; the team should assess annually their patients' self-management skills, beginning at age 12; the team should engage their young patient and his/her caregiver(s) in phased transition planning, patient education, and transfer readiness at least annually at scheduled visits, beginning at age 13; and by age 14, the team should assure a transition plan that meets the comprehensive needs of the youth developed in collaboration with caregivers, other health care providers, school personnel, vocational professionals, community services providers, and legal services (as needed).

"Transition is not a moment in time; it's a process of preparing youths and families for the process of becoming adults," Lawrence W. Brown, MD, FAAN, associate professor of neurology and pediatrics at the Children's Hospital of Philadelphia and lead author of the consensus statement, told Neurology Today in an article about the consensus panel.

The transition statement is intended to be a practical guideline and not just aspirational, Dr. Brown said. "If we start early and incorporate the principles into our practices, it will not only make the process easier but achieve the goal of helping our patients to achieve their full adult potential.

"The final step of transfer starts with the identification of a responsible adult primary care provider who can work with adult neurologists or sometimes assume care entirely. We know that young adults are at risk when they move into a new system; they run out of medication, fail to make or keep appointments, and make poor choices in general. We should never let our patients get lost."