Over 300,000 children in the United States have epilepsy, and children account for almost one-third of all new epilepsy cases diagnosed each year. Epilepsy in children is associated with substantial co-morbidity, including other neurological disorders, developmental delays and impaired educational performance, and difficulties in attention and adaptive behavior. Among older children there are increased rates of depression and other mental health and social problems. 

Substantial barriers interfere with the optimal treatment for children with epilepsy.  Epilepsy itself is comprised of a heterogeneous set of syndromes, requiring a careful diagnostic evaluation and selection of therapy tailored to the particular seizure type. Although epilepsy is not a rare condition, most primary care clinicians encounter relatively few children with this disorder.  Correspondingly, clinical expertise at the primary care level is highly variable, and access to subspecialty consultation is of great importance.  This need for clinical expertise has been heightened by the introduction of many new medical and surgical treatments in the past decade, with constantly evolving recommendations for their use.  

Unfortunately, the supply of neurologists with expertise in childhood seizures is limited. Estimates of fully trained, board certified child neurologists are just over 1000.  The Child Neurology Workforce Study of 2002 estimated that there are only 817 full-time child neurologists in the United States.  Many are in urban academic centers and see patients only part time, as their other responsibilities include teaching and research2.  The supply of pediatric neurologists is not expected to improve in the near future, as many are approaching retirement and there are not enough new specialists entering the field to replace them.   This shortage creates long waits for appointments and the absence of pediatric neurologists in rural areas creates transportation problems for families who have to travel long distances to access care.    This lack of access creates delays that are frustrating for families and practitioners, may compromise clinical outcomes, and require significant resources within the practice to monitor waiting lists of patients for changes in acuity.

How bad is access to care?  Interviews with pediatric neurologists by NICHQ indicate that access to pediatric neurologists or pediatric epileptologists for new patients varies from approximately one to nine months.  Some parents report much longer wait times for an appointment or not receiving a referral to the appropriate specialist in a timely manner – in some cases, years after the referral should have occurred.

What else interferes with good care?  Interviews with parents report difficulty not only in finding appropriate specialty care in a timely manner, but also difficulty with:

• finding care that includes them as important members of the team;
• coordinating care between multiple providers; and,
• accessing resources that could provide support with schools, insurance companies, and other situations

Health care providers report the need for improved communication, referral guidelines, competency agreements, and access between specialty and primary care.