The Transition of Care from Pediatric to Adult Neurology: Leaving the Cocoon

Susan Duberstein, MD, PhD

"I never did that before!"

Growing up brings many new experiences, some especially challenging. The transition from pediatric to adult healthcare involves more than just a change in doctors; it’s a juncture in life that affects medical, emotional, and psychosocial aspects of care. Many “pediatric” patients, despite a legal adult age, may never have called for an appointment on their own, let alone navigated the complexities of an insurance system or an online electronic medical record.

This transition can be difficult for patients with conditions like epilepsy, static encephalopathy or neurogenetic disorders, which typically require ongoing, specialized care that adapts to the evolving needs of the patient.In addition, the surveillance of some of these conditions may be less familiar to adult clinicians. Such patients require advance planning and ongoing support to ensure that they continue to receive optimal care in adulthood. Key factors in the successful transition of care from pediatric to adult neurology include healthcare continuity, patient education, psychosocial support, and the involvement of a multidisciplinary team.

Healthcare Continuity and Coordination

"But who do I call?"

One of the most crucial aspects of a successful transition from pediatric to adult neurology is ensuring continuity and coordination of care. Pediatric and adult healthcare systems often differ in their approach, facilities, and available services. In the pediatric system, care is typically family-centered, with parents or guardians playing a central role in decision-making. In contrast, adult neurology care shifts to an emphasis on patient autonomy and independence. This difference can create challenges in ensuring that care remains consistent and integrated as patients age.

Both pediatric and adult clinicians need to work closely together to ensure a smooth handover. This may involve transferring medical records, sharing treatment plans, and the “warm hand-off” —directly discussing the patient’s condition in detail. Ideally, a transition plan should be developed that includes timelines, goals, and any necessary resources for the patient and their family, and this plan should be initiated long before the patient’s age-out of the pediatric clinic, and a standardized approach within a hospital system or clinical home can help make the transition even smoother. Effective coordination between healthcare teams also ensures that the patient does not experience any gaps in care, which is particularly important for patients with chronic neurological conditions who require regular monitoring and treatment.

Another practical consideration in the transition process is the shift in health insurance coverage. Losing pediatric coverage may lead to a need to negotiate complex insurance options, which should be addressed well before adulthood. Access to necessary services, including medications and therapies, is essential to prevent interruptions in treatment and avoid exacerbations of the neurological condition.

Patient Education and Self-Management

"I don’t know what to do next."

Probably the single most essential factor in the transition process is empowering the patient to take an active role in managing their healthcare while still of pediatric age. During pediatric care, parents obviously take the primary role in the management of their child’s condition. However, as patients move towards adulthood, they need to begin to take age- and ability-appropriate responsibility for their own healthcare decisions. This shift requires both ongoing patient education and clinic visits focusing on not just the medical aspects of their condition, but the logistics of managing their own healthcare.

Education should begin early, ideally several years before the transition occurs, to allow the patient to gradually take on more responsibility. Key topics might include understanding their diagnosis, recognizing warning signs, managing medications, navigating healthcare systems, and accessing necessary resources. For example, a patient with epilepsy may need to learn how to track seizures, create systems for remembering to take medications, and understand the implications of their condition for driving, work, and social activities. By gradually increasing their involvement in their own care, patients can gain confidence and independence, which leads to better adherence to treatment plans and improved overall health outcomes.

Psychosocial Considerations

"This feels so different and strange!"

The transition to adult neurology is not just a medical process—it is a highly emotional and psychosocial one. Patients with chronic neurological conditions may experience feelings of loss and anxiety as they move away from the supportive pediatric environment, where healthcare is typically more familial and holistic, to an adult system that may feel more clinical and impersonal. In addition, young adults with neurological disorders may face common challenges, such as navigating education, employment, and relationships, while also managing a long-term medical condition.

Psychosocial support is essential to help patients adjust to these changes. This may include counseling, support groups, and mental health services to address issues like depression, anxiety, or identity crises that often accompany chronic illness in young adulthood. Family members also need support, as they must adjust to the shift in their role in the patient’s care. Effective psychosocial support helps mitigate the emotional stress of the transition, reduces feelings of isolation, and promotes overall well-being.

Multidisciplinary Involvement

"I have so many different appointments!"

The complexity of many neurological conditions can mean that the patient’s care requires a multidisciplinary approach. This might include neurologists, psychiatrists, physiotherapists, occupational therapists, speech therapists, social workers, and nurses, all working together to provide comprehensive care. During the transition from pediatrics to adult care, it is essential that the patient’s care team in the adult system is fully aware of the patient’s history, current health status, and future needs.

For example, a patient with static encephalopathy may need not only medical management from a neurologist but also physical therapy to maintain mobility and speech therapy to address communication difficulties. These services, easily accessible in childhood, may be difficult to obtain in adulthood, especially if there is any lapse in services. Involving multiple specialists in the transition helps to ensure that the patient receives care that addresses all aspects of their health.

Conclusion

"I’m ready to go…but I’ll miss you!"

The transition of care from pediatric to adult neurology is a multifaceted process that requires careful planning, coordination, and support. Healthcare continuity, patient education, psychosocial support, multidisciplinary collaboration, and access to care all play vital roles in ensuring a successful transition. Given the complexity of neurological conditions and the unique challenges faced by young adults with these conditions, a well-structured, patient-centered approach is essential to facilitate this transition and promote long-term health and well-being. Ultimately, the goal is to empower patients to take control of their healthcare, fostering independence and ensuring that they continue to receive the care and support they need as they move into adulthood.