Epilepsy—Stereotypes,Misinformation, and Quality of Life
Abstracts & Commentary
Sources: Krauss GL, et al. "The scarlet E"—The presentation of epilepsy in the English language print media. Neurology 2000;54:1894-1898; Long L, et al. An assessment of epilepsy patients’ knowledge of their disorder. Epilepsia 2000; 41:727-731; Markand ON, et al. Health-related quality of life outcome in medically refractory epilepsy treated with anterior temporal lobectomy. Epilepsia 2000;41:749-759.
Despite decades of remarkable progress in better understanding and treating epilepsy, the disease remains mysterious and frightening to much of the public and many patients. Krauss and colleagues searched 2000 English-language newspapers and popular magazines and found 210 articles that emphasized aspects of epilepsy. Epileptologists reviewed the article for accuracy and categorized inaccuracies. The reviewers also evaluated the articles for thematic content and major themes. Thirty-one percent of the articles contained a major inaccuracy, the most frequent being scientific inaccuracies, exaggeration of treatment benefits, and exaggeration of risks of seizures. Errors were more likely in reports of new drug therapies (52%). More than one-third of stories that reported nonpharmaceutical treatments or described patients’ daily living also contained major inaccuracies. Six percent of stories described demonic or supernatural imagery. Both medical and nonmedical journalists stated inaccuracies. Medical reporters were more likely to overstate the benefits of novel treatments or research, whereas nonmedical specialists tended to overstate the risks of seizures or stigmatism in patients.
Long and associates identified inaccuracies in knowledge about epilepsy equal to the above journalists’ reports. Long et al developed a survey in order to develop educational resources to patients with epilepsy. The test used multiple-choice and true-false questions conducted among patients referred to a comprehensive epilepsy program at a tertiary care center. Patients subsequently found to have nonepileptic seizures or diseases were excluded. Of the analyzed group, 29 incorrectly answered the question, "What is epilepsy," and attributed the illness to either "a mental disorder" or a contagious disease. Forty-one percent of patients believed an object should be placed in the mouth to prevent tongue-swallowing during a seizure. Twenty-five percent thought pregnant women should discontinue antiepileptic medications to avoid teratogenic effects on the fetus. Twenty-five percent of patients answered that operating a motor vehicle was appropriate if they either "doubled-up on medication," did not drive alone, or "pulled over" at seizure onset. Fifty-two percent were unaware that employers are prohibited from inquiring whether potential employees have epilepsy. Age and education only weakly correlated with likelihood of correct answers. No linkage was found between the number of years with epilepsy and the likelihood of correct answers.
The increasing emphasis to measure quality of life in assessing outcome of epilepsy reflects an important new emphasis on treatment. Markand and colleagues prospectively examined the change in quality of life resulting from anterior temporal lobectomy for medically refractory epilepsy and found a divergence between improved seizure control and improvements in quality of life. Markand et al used a presurgical interviewer-administered survey to assess quality of life in 90 patients referred for refractory partial seizures. Fifty-three patients received temporal lobectomy; the remainder were either unsuitable for surgery or declined it. The study compared presurgical survey results with results obtained one and two years after surgery or nonsurgery. The patients who received surgery enjoyed a significant improvement in quality of life. Further analysis, however, showed that, of all groups, only the patients who became completely seizure-free following surgery enjoyed an improved future quality of life.
Commentary
Long et al’s study is limited by using a nonvalidated survey, and it is possible that some of the terms used (e.g., "mental," to describe nonorganic disease) may have been misinterpreted by patients. Nevertheless, the results highlight the gap between a patient’s understanding of the medical and social implications of epilepsy, and a physician’s concern for achieving relief from seizures. Krauss et al depended on print media, and it seems likely that television reporting would reveal similar or greater inaccuracies. The findings reveal an ongoing need for patient education and increased dissemination of proper information to the public. Reliable information can be obtained on the Web sites of the Epilepsy Foundation or the American Epilepsy Society, but all too often other avenues distribute a background of misinformation. The greatest opportunity to educate patients comes from the office visit. Markand et al address an important question: "Which patients benefit from temporal lobectomy?" The result that patients who become seizure-free, but still experienced auras, had a quality of life similar to those who did not receive surgery bears further attention in presurgical candidates. —fred a. lado
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