On Beyond Seizures: Unmet Needs in Pediatric Epilepsy Clinics

Clinic time is limited.There are demands on resources from all sides, from updating history to making sure prescriptions are refilled, getting appropriate letters written, filling out forms for school…families and clinicians alike may find themselves feeling overwhelmed.Certainly, it is important to make sure that seizures are under control.Practical concerns of seizure frequency and medication changes can eat up clinic time and may leave little time or energy for what can be seen as secondary or ancillary.Yet the subsidiary issues may be the ones that most affect quality of life for patients and families who also need support with learning, mood, behavior, school, family stress, and with the practical work of coordinating care.

Mental health is a difficult subject for many neurologists to tackle; they may feel that it is not in their scope or worry that addressing this issue is too time-consuming. However, anxiety and depression do affect children and adolescents with epilepsy and can be the main quality of life issues identified by patients and families. The International League Against Epilepsy (ILAE) recommends routine screening for anxiety and depression, along with shared care among the professionals involved. Screening, though, is only a first step: families also need timely access to assessment, counseling, and treatment when a concern is identified. Involvement by social workers who can follow up with patients and help coordinate care and identify mental health resources can help to ensure that these issues do not slip through the cracks.

Learning and development are also significant quality of life issues. Difficulties with attention, memory, behavior, or school performance can affect participation and learning. A child may benefit from monitoring and, when appropriate, neuropsychological assessment and coordination with school supports. The identification and treatment of ADHD, for example, as perhaps the most significant comorbidity in pediatric patients with epilepsy, can improve a child’s scholastic experience and make a huge difference in their lives.Unfortunately, identifying a concern does not guarantee that an evaluation or service will be readily available. Resources for testing and then treating learning issues and neuropsychiatric comorbidities are scarce, and testing is time-consuming.Development of a pathway to evaluation, either by school systems or developmental pediatric programs, can be instrumental in picking up these issues.

Families also need care that is better coordinated. Pediatric epilepsy care may involve neurologists, pediatricians, psychologists, therapists, schools, and community services. The American Academy of Pediatrics’ (AAP) National Needs Assessment found that families and clinicians both reported problems with coordination and communication that had nothing to do with the primary issues of seizure frequency; incompatible health-record systems and limited time for clinicians to communicate were among the most-cited issues. Families have trouble with repeating their child’s history over and over, especially when language barriers exist, and with tracking referrals and coordinating appointments for multiple specialties.A designated care coordinator can ensure clearer communication between the epilepsy clinic, primary care, specialties and school and make the system easier for families to navigate.

Overall issues of access and equity obviously cut across all these needs. Specialist care, mental-health services, and other supports may be harder to obtain for families facing financial, transportation, language, workforce, or geographic barriers. A 2025 joint task-force report from the American Epilepsy Society (AES) and the ILAE identifies social and economic conditions, workforce limitations, and health-system deficiencies as the main contributors to disparities in epilepsy care. The AAP also notes that more rapid response to questions and availability of appointments, even if virtual, is seen as a key need. Clinics can help by making interpreter services and accessible education part of routine care, improving access to telehealth, and by connecting families with community resources—not assuming that every family can overcome barriers on its own.

Finally, the transition to adult care needs to be treated as a process, not addressed solely as a last-minute referral. There should be time for early planning and active skill building before transfer of care is achieved.Young people need gradual support to understand their condition, begin to manage their own medication, to learn to advocate for themselves during appointments and admissions, and take on these responsibilities step by step. In one 2024 pilot study, only 4% of surveyed adults reported receiving clear transfer instructions, such as the name of their new adult clinician or the location of the new clinic. That finding points to a practical solution: start planning early, involve the young patient directly, and make sure there is a clear next step after pediatric care ends.

The greatest unmet needs in pediatric epilepsy clinics are interconnected. A child’s well-being depends not only on seizure control, but also on whether emotional or learning difficulties are noticed, whether referrals lead to real services, whether clinicians communicate, and whether families can access care. The solution does not require every clinic to provide every service in-house. It does require routine screening, dependable referral pathways, coordinated communication, and a plan for transition. The goal is care for the child that allows them to thrive in all aspects of life.

REFERENCES
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