Epilepsy Care Evaluation Group. The effect of a special nurse on patients' knowledge of epilepsy and their emotional state

BACKGROUND: People with epilepsy often report being given insufficient information and support. However, there is little evidence from general practice about how much they know and how they feel. AIM: To describe social differences in the knowledge of epilepsy of people with the condition and test the potential effect of a nurse intervention in general practice on patients' knowledge and depression levels. METHOD: A questionnaire that included measures of knowledge, anxiety, and depression was sent to people with epilepsy aged over 15 years who were registered with 37 general practitioners. Responders were randomized to a controlled trial, offering either two appointments with an epilepsy nurse or usual care. Six months later they were reassessed. RESULTS: Two hundred and fifty-one out of 283 (89%) of the patients with epilepsy completed questionnaires and entered the study at Stage 1. One hundred and ninety-six out of 232 (84%) of those who entered the study, who remained in the practices and were eligible, returned questionnaires at Stage 2. The average duration of epilepsy was 23 years (range 2-79 years). There were significant differences in patients' levels of knowledge of epilepsy at Stage 1. Younger people, those who had left school after 16 years of age, those with GCSEs, and people who belonged to self-help groups had higher knowledge levels, and these were independent effects. Older people and those with a recent epilepsy attack had significantly higher depression scores. Knowledge scores did not differ significantly after the nurse intervention (Stage 2). At Stage 2, the risk of depression was less in the group randomized to be offered nurse input; the effect was mainly in a subgroup of patients with no recent epilepsy attack; their risk of depression was a third of the risk in the control group. CONCLUSIONS: Knowledge of epilepsy differs significantly, with social factors and self-help group membership having independent effects. A nurse-run clinic reduced the risk of depression for people with no recent epilepsy attack, but knowledge levels were not affected. This does not exclude the potential for patients learning more about epilepsy; it may be useful to suggest that patients join self-help groups early on.