Purpose: To describe a group of people with newly diagnosed epilepsy and to test the effect of an epilepsy nurse specialist on patients' knowledge of epilepsy, satisfaction with the advice provided, and psychological well-being.
Methods: Neurologists in the United Kingdom (U.K.) recruited adults with newly diagnosed epilepsy. Patients were randomized to receive the offer of two appointments with an epilepsy nurse specialist or usual medical care. The main outcome measures were a questionnaire assessing patients' knowledge of epilepsy, the Hospital Anxiety and Depression Scale, and patients' reported satisfaction with the advice and explanations provided on key epilepsy-related topics.
Results: Ninety people with new epilepsy completed the trial. At baseline, fewer than half the patients reported having been given enough advice on epilepsy, and there were important differences in patients' knowledge of epilepsy. Lack of a U.K. school-leaving examination pass (General Certificate School Examination) was associated with lower knowledge of epilepsy (p = 0.03). At follow-up, the patients randomized to see the nurse specialist were significantly more likely to report that enough advice had been provided on most epilepsy-related topics compared with the control group. There were no significant differences in knowledge of epilepsy scores. However, there were significant differences in the group who, at baseline, had knowledge scores in the lowest quartile; those randomized to the nurse had higher knowledge scores (42.7 vs. 37.2; p < 0.01). Compared with doctors, the nurse was highly rated for providing clear explanations.
Conclusions: Patients who have less general education have less knowledge of epilepsy. The introduction of a nurse specialist in epilepsy is associated with a significant increase in patient reports that enough advice has been provided. Nurse intervention appears to help those with the least knowledge of epilepsy improve their knowledge scores.