Effect of a primary care based epilepsy specialist nurse service on quality of care from the patients' perspective: results at two-years follow-up

Epilepsy specialist nurses have the potential to improve the quality of care of community-based patients with epilepsy, although evidence of their effectiveness is limited by the lack of formal or long-term evaluation. Results of a controlled trial that assessed the effectiveness of a primary care based specialist nurse-led service suggested improvements in communication and satisfaction but not health status at one-year follow-up. A second follow-up was conducted to assess the effects after two years. Patients who reported having seen the nurse at least once in the two years ('users') were compared with those who had not ('non-users'). Comparisons between users and non-users were adjusted for baseline differences. Results were based on 40% of all 595 adult patients known to have epilepsy in 14 general practices and who answered questionnaires at baseline and two years later. The new epilepsy service was used more by those with greatest needs for care. Users of the new service were significantly more likely than non-users to have discussed 8 of ii topics asked about epilepsy [odds ratios (ORs) ranging from 2.42 to 7.91] with their general practitioner (GP), and 2 of the 11 topics with the hospital doctor (ORs 5.59, 5.74). Service users were significantly less likely than non-users to feel their GP knew enough about epilepsy [OR 0.27, 95% confidence intervals (CI) 0.74-0.98], and significantly more likely to report epilepsy as having an adverse impact on 3 of 10 areas of everyday life (ORs ranging from 2.09 to 2.50). Users were more likely than non-users to have seen their GP for any reason in the previous year and to change their medication from use of more than one antiepileptic drug to monotherapy, although findings were not significant. Results suggest that the epilepsy specialist nurse service is not a cost-reducing substitute, particularly for general practitioner care, but it appears to improve communication and prescribing of monotherapy, and increases access for the most needy. The service may, however, have an adverse impact on patients' perceptions of the effects of epilepsy on aspects of everyday life.