Abstracts

Informal surveys reveal that in Canada (2003) there are no more than two dozen nurses working part or full-time in epilepsy. Three large Canadian provinces have no access to epilepsy nurses. We conducted a survey to assess the perceived role and value of specialized epilepsy nurses in the out-patient and in-patient setting. This was a cross-sectional survey involving epileptologists and epilepsy clinic patients across Canada. Epilepsy centers were identified from previous census. Physicians and patients answered a ten-item questionnaire. Physicians were asked about dedicated funding for epilepsy nurses, availability at their centre, specific roles, and a rating of importance of specialized epilepsy nurses. Patients were asked about type of interaction with the epilepsy nurse, perception of helpfulness and satisfaction, as well as health care setting. The project was approved by the internal Ethics Review Board. At the time of this submission, 17 centres had replied, 41% had dedicated funding for a total of 25 epilepsy nurses. Their roles were multiple: 25-100% of their activities were clinical, 5-40% research and 5-30% purely inpatient. Seventy-six percent of the nurses were involved in educational activities, 65% were involved specialized seizure monitoring units, 58% were involved in coordinating pre-surgical evaluation, and 82% were involved in other patient care areas. All centers rated the role of the epilepsy nurse as highly important (7/7). At the time of this report, 92 patients replied. Ninety-six percent had contact with an epilepsy nurse, either directly, over the telephone or both. The most commonly reported benefit was enhancing communication between patients and neurologists (91%), understanding anti-seizure drugs (62%) and understanding epilepsy (54%). In addition, nurses assisted patients cope with epilepsy. Seventy-five percent (75%) rated this as 5/7 or higher, and 80% were highly satisfied with nursing intervention (5/7 or higher). There is a need for an increased role of dedicated epilepsy nurses at all levels of epilepsy care. Both physicians and patients rated patient education, assistance with care and organizational aspects as highly valuable. Unfortunately, many patients with epilepsy do not have access to this valuable resource.