In a recent survey conducted by Neurology Advisor, respondents indicated that the primary challenges in transitioning pediatric neurology patients to adult neurology care were “preparing the patients for self-management” and “developing a relationship with adult provider(s) for potential consultation.” Neurology Advisor recently detailed steps that neurologists should take to facilitate this transition, based on a 2016 consensus statement from a panel convened by the Child Neurology Foundation.1 To gain additional insight on how this process can be best managed by clinicians, regardless of specialty, we interviewed the following experts:
- Sarah Kelley, MD, assistant professor of neurology and pediatrics and director of the pediatric epilepsy monitoring unit at the Johns Hopkins University School of Medicine in Baltimore, Maryland
- Michael D. Frost, MD, FAAN, pediatric neurologist at the Minnesota Epilepsy Group in St. Paul
- Lynne P. Taylor, MD, FAAN, FANA, neuro-oncologist, clinical professor of neurology, and co-director of the Alvord Brain Tumor Center at the University of Washington Medical Center in Seattle
Neurology Advisor: What are the some of the main general considerations regarding the transition from pediatric to adult care?
Dr Kelley: It is important to remember that a transition to an adult provider is different from a transfer. In a patient transfer, when the patient switches providers, an appointment is arranged, a summary is sent, and the patient sees the adult provider. A transition is a much more complex process that begins much earlier. This involves preparing the child and the family for the transition starting in childhood or adolescence so that they are prepared to move from a pediatric provider and the world of pediatric health care and services into the adult world, which often does not have the same number of services available.
Dr Frost: Factors to consider include expectations of families regarding outcome, the patient’s functional level, primary diagnosis, and severity of involvement, as well as the interest, expertise, and personality of the adult caregiver.
Neurology Advisor: What are the most significant challenges involved in this process?
Dr Taylor: The main challenge is that in the pediatric world, providers are trained to take care of the whole family. Many patients making the transition from pediatric to adult care find it to be less welcoming, warm, and family-focused than the care they are used to. And because in many respects the patient and the team “grow up together,” the transition to the adult world can feel really cold.
Dr Frost: While patients with well-controlled, normal functioning may require minimal support from the point of transfer to an adult provider, patients with more profound issues will require many different services — and not all adult providers can assist with the coordination of care, including connecting with family members who have remained involved in the patient’s care. Pediatric-trained providers tend to deal differently with families, particularly if there has been a relationship built over years. This can be a tough act to follow.
Dr Kelley: The biggest challenges are finding the time and the money for a proper transition. Ideally, there would be transition clinics with pediatric and adult physicians, nurses, and social workers who would meet with the patient to facilitate transition. However, this is cost-prohibitive in most settings, and it is difficult to find a way to reimburse multiple providers for one visit. Using transition tools and doing pieces of transition planning at each visit can help with the time component of the transition.