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.
Neurology Advisor: How should the transition process be approached to ensure continuity of care?
Dr Frost: Preparation and communication! The transition should not be a surprise for families. If possible, the transition should start early and there should be some overlap between the pediatric world and the adult world. This could or should include a transition “team” with a transition clinic coordinated by an advanced practice nurse or physician’s assistant.
Dr Taylor: There should be lots of communication — in person, not by email — between the adult and pediatric physicians and other team members. Early involvement of social workers is key; they can introduce the new care team and coordinate with the prior social work team, and they have an understanding of the patient, family, faith community, and other resources. Situations in which special services need to be continued require planning and coordination. This is particularly true if there is to be a transition in insurance coverage or living arrangements.
Dr Kelley: Pediatric providers should start thinking and talking about transitions when patients are as young as 10 to 12. They should begin thinking about prognosis and what a realistic plan should be as the child enters adult life. To the extent that the child’s developmental level allows, they should start talking about responsibility and independence, and over the years help patients take steps towards that independence. For example, they can ensure that patients know what medications they are taking and what the doses are, and encourage them to learn how to refill their prescriptions.
They can discuss what patients can do for themselves to stay healthy and reduce the impact of comorbidities. Pediatric providers should have discussions with families about the patient’s decision-making capacity and whether legal guardianship or power of attorney should be pursued. Creating a “transfer packet” that includes such information as a summary of diagnoses, treatments, and evaluations, as well as current plans and emergency care, can also be helpful. Transition planning over many years should involve the patient and their family. Having these discussions and providing this guidance should be an expectation of good care.
Using available transition tools can help in this process, too, and starting early to prepare and empower patients and families to actively participate in their care and maintain good health are the first steps to ensuring good transitions. It is also important to make sure that both pediatric and adult providers are aware of the challenges families are facing and how to best address them or provide the best resources to deal with these challenges.
- 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(8):835-840. doi:10.1212/WNL.0000000000002965
This article originally appeared on Neurology Advisor