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