Effect of a primary-care-based epilepsy specialist nurse service on quality of care from the patients' perspective: quasi-experimental evaluation

AbstractInitiatives to improve epilepsy care have emphasized the role of specialist nurses. Formal evaluation of these initiatives are scarce. Further evaluative studies are required to ascertain the optimal means of providing epilepsy care. This study aimed to assess the effect of a primary-care-based epilepsy specialist nurse service on patients' reported health status, perceived quality of life, health care use, attitudes to health care, and provision of information. A quasi-experimental follow-up questionnaire survey was sent to all 574 patients aged 16 years or over and receiving antiepileptic drugs for epilepsy, registered in 14 general practices in north-west Bristol. Patients in seven practices who received the new service (intervention patients) were compared with patients in seven practices who did not (control patients). Follow-up comparisons between intervention and control patients were adjusted for baseline differences. Response rates to the first, second and both surveys were 66.2%, 68.6% and 50.9%, respectively. Intervention patients were more likely than control patients to have discussed most epilepsy topics with general practitioners and/or hospital doctors, and were significantly more likely to have categorized general practitioner care as excellent (odds ratio (OR) 2.30, 95% confidence intervals (CI) 1.12–4.70). Intervention patients were significantly less likely than controls to have reported never missing taking their anti-epileptic drugs (OR 0.48, 95% CI 0.24–0.94). There were no significant changes in measures of health status, use of other health care services, and perceived quality of life between intervention and control patients. This study provides evidence of an improvement, after 1 year, in communication and satisfaction but not health status resulting from the introduction of a primary-care-based epilepsy service