During the course of his training in pediatric neurology, Jason T. Lerner, MD, sat in on a support group his wife was running for teens with epilepsy. “Hearing about their struggles was eye-opening,” says Dr. Lerner, a UCLA pediatric neurologist. “I came to appreciate how much these patients could benefit from a center that broadly addressed their needs — focusing not just on the underlying epilepsy, but also on comorbidities and the stigma associated with the diagnosis.”
The new Adolescent Epilepsy Center at UCLA brings together a team of providers to focus on all aspects of health for adolescents with epilepsy. The center, under the direction of Dr. Lerner, also aims to help adolescent patients make a smooth transition from pediatric to adult providers.
Too often, Dr. Lerner says, care for pediatric epilepsy patients focuses on seizure control while paying insufficient attention to comorbidities and psychosocial concerns. An estimated 30-to-40 percent of adolescents with epilepsy have comorbidities, such as depression, anxiety, attention deficit hyperactivity disorder, learning disabilities, sleep disorders and autism spectrum disorder. In some patients, Dr. Lerner notes, successfully bringing the seizures under control can heighten the severity of any comorbidities — even bringing out previously dormant psychotic symptoms, a phenomenon referred to as forced normalization.
Dr. Lerner says the value of a center that would holistically treat adolescents with epilepsy was brought home by his experience with a patient whose quality of life plummeted after her seizures were finally controlled. “I had followed this patient for a number of years, and when we finally were able to control her seizures and improve her EEG, her underlying anxiety came to the forefront and she could barely leave the house,” Dr. Lerner says. “Often it’s these comorbidities that are the most impactful for patients.”
Treating conditions such as depression and anxiety in patients with epilepsy requires special expertise to ensure, for example, that medications don’t adversely interact with anti-seizure drugs. Dr. Lerner notes that there is a shortage of child psychiatrists and psychologists in general, and fewer still with expertise in seeing patients with epilepsy. Compounding matters, these providers may not accept insurance. “For many epilepsy patients, we might suspect depression but have trouble referring them for diagnosis and treatment,” Dr. Lerner says. “With our center, if we have a concern, we will be able to refer patients internally to a mental health professional who is experienced in seeing adolescents with epilepsy.”
Many adolescent epilepsy patients see multiple practitioners at different clinics, which is both inconvenient and leads to uncoordinated care, Dr. Lerner notes. The Adolescent Epilepsy Center at UCLA will allow patients to see all of their providers in a single appointment. The center includes pediatric neurologists and epileptologists, nurse practitioners, a psychiatrist, a psychologist, a dietitian, an occupational therapist and a social worker. The center treats any patient ages 12 to 20 who has epilepsy. Some will be treated on a regular basis; others may remain with their community physician for regular care while being referred to the center on a periodic basis to ensure that all of their needs are being met.
In addition to clinical services, the center will include a research component. Plans are already afoot to partner with UCLA’s Mindful Awareness Research Center to examine the potential benefits of incorporating mindfulness for adolescent epilepsy patients, in light of research suggesting that adults with epilepsy can benefit from the practice. Monthly support groups also will be offered to both adolescent epilepsy patients and their caregivers. The center will develop a network of community-based neurologists, psychiatrists and other practitioners with whom it will partner in providing patient care. Finally, there will be a focus on community education. “More than most chronic diseases, there is a stigma associated with epilepsy,” Dr. Lerner says. “Part of improving our patients’ quality of life is educating the community to begin to remove that stigma.”