Abstracts

Rationale: To evaluate the effectiveness of epilepsy specialist nurse (ESN). Primary aim was to improve quality of care of outpatients with epilepsy. The ESN serves as a link between primary and secondary care. Within our study, the ESN provided patients with information, support and counseling 1-3 hours in average per patient. Methods: Controlled, randomized, repeated-measures study design. Patients were randomly allocated to either an epilepsy nurse group (intervention) or waiting-list group (control). 143 Patients (16 to 78 years) were included: The ESN group (n=67) completed the questionnaires before the first consultation (T1) and about 6 months later (T2), the control group (n=76) completed the questionnaires twice within 6 months. Primary outcome measure was satisfaction of patients with support and information about epilepsy and related topics. We assessed further epilepsy specific knowledge, satisfaction with the clinic and the staff, coping with epilepsy, restrictions in daily life, epilepsy-related fears, anxiety and depression. Analysis of covariance using the baseline score as covariate was used to test the effectiveness of ESN. Results: The ESN group improved significantly in satisfaction with support and information compared to the control group (p=0.002). In tendency, satisfaction with staff-interaction resp. interaction with physician improved (p=0.093, two-sided). As expected, the increase in satisfaction was clearly dependent on patient’s need for information assessed before consultation (Jonckheere-Terpstra-Test; p<0.001). In addition, patients who received more information and counseling with respect to the number of topics addressed were more satisfied (Jonckheere-Terpstra-Test; p<0.001). The ESN group improved also in epilepsy specific knowledge (p=0.005), and in coping with epilepsy (subscales information seeking (Wilcoxon-test p=0,001) and ability to express emotions (Wilcoxon-test, p=0,036)). No differences between groups were observed in other measures nor in regard to seizure frequency and self-reported adverse effects of medication. Conclusions: Epilepsy specialist nurses can improve quality of comprehensive care and are important links between primary and secondary care. Unrestricted research grant from UCB.