BALTIMORE – People with epilepsy – and their physicians – report that they continue to encounter barriers to optimal care, according to Dr. Sandra Helmers.

Underinsurance and a lack of insurance are among the biggest concerns for both parties. But other factors play into the equation as well, she said at the annual meeting of the American Epilepsy Society.

She and her colleagues created two surveys to identify barriers to access and treatment from the perspective of both patients and physicians. A total of 63 physicians and about 700 patients responded to the surveys, which were posted on the websites of the Epilepsy Foundation and the American Epilepsy Society.

Physicians cited health insurance and transportation issues as the biggest impediments to optimal care. Patients also expressed concern about these; they reported transportation difficulties to be the top barrier to making appointments, said Dr. Helmers, director of the adult electroencephalography laboratory at Emory University Hospital and Clinic, Atlanta.

Other serious problems from the physicians’ point of view included patients’ lack of understanding about their disease, their attitudes about epilepsy and its treatment, and their educational level.

Patients cited memory issues as a large problem. These can interfere with discussions about the nature of their disorder, keeping appointments, and even remembering to take antiepileptic drugs.

For patients, cost was second to transportation difficulties, but only slightly so. Open-ended questions elicited some details in this area:

• "I have health insurance, but it still costs a fortune to take medication and pay the copays. It’s like you’re only allowed to be healthy if you’re rich."

• "It’s mostly the expense of the drugs. I am a single parent, and it’s very tough to afford the drugs I have to have to function."

• "With high-deductible insurance, my [drug] costs me $600 per month."

• "My client has no money for appointments or medicine. The free clinic has him saturated on seizure meds and pain pills ... There is no quality of providers at the free clinics."

Memory impairment, caused by both the disorder and its treatment, was a large impediment to quality care:

• "I have memory loss due to a left temporal lobectomy ... and the surgery resulted in affecting my memory storage and retrieval."

• "After a big seizure, my memory is shot. ... I’m scared to go anywhere because I’m scared I will have another one."

• "I have kids, and it’s hard to remember to take the meds and follow instructions to the exact orders of the doctor."

Dr. Helmers pointed out some differences in responses between the two groups, which she said highlight the topic of health literacy and physicians’ abilities to fully explain the disease in a comprehensible manner. "This raises issues about our ability to educate patients ... in a culturally sensitive, understandable way," with special attention given to patients with memory issues.

Patients sometimes feared their treatment and mistrusted their neurologist – problems Dr. Helmers said may be related to poor doctor-patient communication. Some answers to open-ended questions highlighted this breakdown in communication:

• "I find it very upsetting to be constantly told to try this drug and that drug. I feel like a lab rat. ... I cry at my doctor’s visits and all they do is tell me to go to a psychiatrist. But that doesn’t work unless the neurologist and the psychiatrist work together in my treatment, especially since some of the psychiatric medications lower my seizure threshold."

• "I feel like my neurologist doesn’t care about me ... just making the money."

• "I feel that as a functioning epileptic, my voice is seldom heard. I am often not understood by my neurologist. I don’t like to see him, because I feel he doesn’t understand me or the life I lead. He does not understand that my epilepsy may influence me, but it does not define me."

With a limited number of physicians skilled in epilepsy management, patients will continue to express frustration with access to care, Dr. Helmers said. "Access to neurologists and epileptologists is being restricted, and this is probably going to get worse," she said. "This means that more and more primary care providers are going to be caring for these patients."

These data also were recently reported at an Institute of Medicine meeting in the hope that they would spur more research about barriers to epilepsy care, she said. "I think this will give us some direction for future research. The surveys show that we have a huge amount of room to improve the quality of care in epilepsy. We have to address the issues, but the question is – how?"

Dr. Helmers said she had no relevant financial disclosures.

Barriers to Epilepsy Care Continue to Frustrate