Living With Epilepsy: The Transition From Pediatric to Adult Health Care

The “successful” transition from a pediatric care to an adult care system for adolescents living with epilepsy is a complex process that involves changes in the patient-provider relationship and navigation of systemic barriers.¹ Transition of care typically requires extensive coordination and planning by a multidisciplinary team of health care providers, especially for youth with medical or social complexity.²

Approximately 20% of the United States population are transition-aged individuals (12-26 years) and nearly one-third of those individuals have 1 or more chronic conditions.³ Children with epilepsy are at an increased risk for unmet health care needs.⁴

Nicholas Beimer, MD, a clinical associate professor and the director of EEG Laboratory and Inpatient Epilepsy Monitoring at the Departments of Neurology and Psychiatry at Michigan Medicine, spoke about the effects of age on epilepsy outcomes.

“There is a good chance that patients can ‘grow out’ of seizures in certain types of genetic epilepsy syndromes, many of which start in children. In general, the majority of patients living with epilepsy have seizures that are well-controlled with treatment.⁵ However, that also means that the remaining patient population have refractory seizures and experience recurrent seizures despite treatment,” explained Dr Beimer.

Identifying and addressing barriers in the transition care process is important for improving outcomes and building effective care models for the future.⁴

 The American Academy of Pediatrics (AAP), along with the American Academy of Family Physicians (AAFP) and the American College of Physicians (ACP), updated the 2011 clinical report on health care transition based on the latest research and practice-based evidence. Updates were made to guidance regarding the preparation for transition, integration into adult health care, implementation of strategies using quality improvement methods, and education and training for health care professionals caring for those with pediatric-onset disease.⁶

In honor of Epilepsy Awareness Week, which runs from May 26 to June 2, 2024, Neurology Advisor is focusing on current gaps in the transition of care process and the measures clinicians can take to address those gaps; communication between patients, caregivers, and providers; as well as the education and awareness that is necessary for patient-centered care and improved outcomes.

Barriers in Transition Care

Over the years, health care transition has evolved from being a pediatric responsibility to a shared responsibility between both pediatric and adult care teams, which includes clinicians, nurses, and social workers.⁵ Young adults, especially those living with conditions such as epilepsy, comprise a vulnerable population with unique needs, often resulting in challenges in the transition and transfer of care from a pediatric to adult provider.⁴

“Transition is typically a 3-part process — planning, transfer, and integration to adult health care; however, most physicians do not follow a standard process of doing this,” noted Patience White, MD, co-director of Got Transition^® and professor of medicine and pediatrics at George Washington University School of Medicine and Health Sciences, Washington, DC.

Ongoing Specialty Care

A substantial proportion of children with active seizures and/or epilepsy-related comorbidities receiving treatment with antiseizure medications (ASMs) require continued care with specialists, such as neurologists or epileptologists, into adulthood.⁴

“However, finding a clinician with special expertise is not always easy and takes planning, especially given the considerable burden already weighing on the adult health care system,” Dr White remarked.

Less than half of pediatric patients with epilepsy report receiving care by an adult epilepsy provider after transition.⁴ In fact, approximately 75% of adult patients living with epilepsy still report visiting and receiving care from their pediatric neurologists.²

According to Dr White, this is understandable. “Patients form long-term relationships with their pediatric providers, so transition is, of course, challenging,” she explained.

Transition Readiness

Although structured transition programs have been recommended for children with special needs and have yielded improved outcomes, there are few transition programs for those living with epilepsy. General transition readiness assessments address developing health care skills; however, young patients with epilepsy need additional condition-specific knowledge.¹

A focus group of caregivers to children with Dravet syndrome, a rare type of epilepsy, indicated dissatisfaction in the ability of existing transition programs to provide adequate patient care. In the 2020 study, published in Epilepsy & Behaviors, ² the caregivers reported that these programs were starting too late into the transition period and described them as “not for our kids.^”

One of the key factors that plays a role in improving transition readiness is ensuring the transition starts at an early age. However, conversations regarding transition, which is recommended to be had at age 13, are often only initiated at age 18, right before the transition to an adult health system is taking place.⁷

Dr Beimer noted, “The age at which the patient changes over care is interesting because this practice can vary significantly among clinics and institutions. Standard ages of transition occur from as early as 16 to as late as 21. It isn’t entirely clear what the best age of transfer should be.”

Only one-third of young adults with active epilepsy have transition preparation discussions, the majority of which focus on the patient’s comorbid neurodevelopmental disorder history and epilepsy care provider at the time of last contact.⁴

Structural and Psychosocial Barriers

Successful transition of care depends on the dismantling of structural and psychosocial barriers, including adult providers’ lack of expertise in pediatric-onset conditions and developmental disabilities, inadequate planning by individual physicians and institutions at large, and potential trust issues that are inherent in a new patient-provider relationship.²

“The biggest barrier, however, is in the lack of planning, and part of the planning is helping youth develop their skills to manage their own health and health care,” said Dr White.

Additional barriers in transition care include low socioeconomic status, lack of insurance, poor accessibility, limited psychosocial functioning, and age.Many young adults also consider health care a low priority compared with other facets of their transition, such as education, housing, and relationships.⁶

Implications for Practice: What Providers Need to Know

The existing barriers should encourage providers to better prepare for the transition and transfer of patients living with epilepsy to adult care. Using an epilepsy-specific measure of transition readiness to identify targets for skill-building intervention may be beneficial.⁷

A team of researchers at Michigan Medicine, University of Michigan designed and validated a condition-specific transition readiness assessment tool, EpiTRAQ, for adolescents and young adults with epilepsy.¹

“Both child and adult neurologists should understand that transition occurs over years prior to and after the actual transfer of care between clinics, and it requires continuous and thorough communication between clinics, patients, and caregivers,” said Dr Beimer.

Supporting transition typically involves a structured process in helping youth with epilepsy gain confidence and independence in managing their health care.¹ To address the gaps in transition care, the AAP, in collaboration with the AAFP and ACP, developed the Six Core Elements of Health Care Transition, a structured clinical approach customizable for use in various practices employing diverse transition care models.⁶ The Six Core Elements include:

1. Transition and/or care policy
2. Transition tracking and monitoring
3. Transition readiness and/or orientation to adult practice
4. Transition planning and/or integration into adult approach to care or practice
5. Transfer of care and/or initial visit
6. Transition completion and ongoing care

“This transition process enables practices and providers to think about what to tell their patients during the transition years, and beginning this process early on is very important. This gives the family and youth time to get ready for this change,” explained Dr White, lead author of the clinical report.

Dr Beimer added, “Counseling patients often occurs as part of the education in regularly scheduled follow-up appointments in short sessions over multiple visits, which include verbal discussions, reviewing tip sheets, and watching recorded presentations. Patients and caregivers usually interact with different providers in this setting, including nurse educators, advanced practice providers, physicians, or a combination of all of the above.”

According to the results of a registered nurse-led 2020 study published in the Journal of Pediatric Nursing,⁸ transition education can be provided to adolescents during scheduled inpatient admissions in the epilepsy unit. This conclusion was justified by 100% of the included patients reporting increased knowledge of transition after receiving education during admission. Further, a shared responsibility of providing transition education between inpatient and ambulatory providers may be feasible if this information is incorporated into electronic health records (EHRs).⁸

“We have an electronic version of the questionnaire set up in our EHR, which gets delivered to patients every 6 months between the ages of 16 and 26, and this helps prompt the discussion [of transition] at regular follow up appointments,”¹ said Dr Beimer.

Notes Dr White, “At my clinical practice, we provide youth and parents with transition readiness documents separately, and have them discuss it together. It’s interesting to see parents learn what the youth knows and does not know, and it helps them prepare for the things they’re going to need in the future.”

“Completing readiness assignments between the ages 14 and 18 can be beneficial. As the age for transition draws nearer, it’s essential to have a medical summary to provide to the next adult clinician, as well as the patient, along with a ‘transfer package,’ especially for the more complex cases,” she added.

There are several resources available for health care professionals, shared Dr White, including those involved in the care of patients living with epilepsy:

• Got Transition, a national resource center for practices, youth, and their families;
• Child Neurology Foundation, a toolkit for clinicians adapted from Got Transition for young patients with epilepsy; and
• National Coordinating Center for Epilepsy, an information hub for providers and children living with epilepsy.