More than 16 percent of patients with epilepsy conceal seizures from their doctors, according to a recent study. Previous research has reported that many people with epilepsy hide it to avoid social stigma and loss of employment or driving privileges.
Researchers, from the University of East Anglia in Norwich, England, and at King’s Fund in London, distributed two identical questionnaires to 111 adult patients who’d had epilepsy for an average of 21.5 years. The first questionnaire was completed with the general practitioner at an office visit, and the second was completed anonymously by the same patients about two weeks later. The researchers compared the two questionnaires for each patient.
Forty-two patients (38 percent) told their doctors that they’d had a seizure within the past year. Sixty patients (54 percent) admitted this on the anonymous questionnaire. The researchers suggest that an important reason for not telling the doctor is to keep driving privileges. In England, patients must be seizure-free for 12 months to drive. Six of the 42 patients who told their doctors about seizures still had a driver’s license, compared to 24 of the 60 who admitted anonymously to having seizures.
Another reason for concealing seizures may be to maintain employment. About 47 percent of the patients who told their doctors about seizures were unemployed, compared to 17 percent of those who concealed their seizures.
Patients who’d had seizures in the past year, whether or not they’d told their doctors, were also significantly more likely to be anxious or depressed or to feel stigmatized, than those whose epilepsy was controlled.
Writing in the January 8, 2000, issue of the British Medical Journal, the researchers conclude that while concealing seizures may prevent these patients from getting the best care, many consider that price worthwhile if it allows them to keep driving and working.
The researchers also point out that the doctor’s role in determining whether patients with epilepsy can drive or participate in other activities hampers their ability to provide appropriate care for those patients. They suggest that driving regulations for people with epilepsy be changed. They noted that in Wisconsin, which has a low accident rate, epileptics only need to be seizure-free for three months to drive.
The authors also call on general practitioners to explain to their patients that they must report their seizures if they want to receive optimal care.