Abstracts

Rationale: Epilepsy care and management is commonly reported as inadequate with no recognized panacea to meet all the requirements of its complexity. In Ireland, the National Epilepsy Care Programme has developed an innovative model of care designed around evidence-based principles of effective chronic disease management. This includes the integration of Epilepsy Specialist Nurse [ESN] roles in the provision of epilepsy care. Specialist nursing roles have enormous potential to support population health needs. The ESN is known to support and improve patients’ knowledge and communication pathways and meet the psycho-social needs of patients and their families, although the overall impact on health outcomes is less certain. Evaluation is required to measure the true impact of ESNs on patient care and service performance. Funded by Epilepsy Ireland [EI] and the Health Research Board [HRB], the Specialist Epilepsy NurSe Evaluation [SENsE] study examined the role, impact and cost-effectiveness of ESNs, their impact on patient’s quality of life [QoL], patients’ knowledge of the disease and satisfaction with care.Methods: Based on previous nursing role evaluation in Ireland, a comparative case study methodology collected data using a variety of methods. Data sets came from interviews with ESNs (n=12); multidisciplinary team members (n=22); Directors of Nursing (n=5); five focus groups with patients/carers (n=30); clinical observation of ESNs in practice (n=24) and documentary evidence of individual ESN roles (n=12). Surveys were collected from patients receiving care in an ESN-led service (n=255) and were compared with patients receiving care in services without an ESN role (n=271). Quantitative data were analysed using inferential statistics and qualitative data were analysed using template analysis.Results: Patients receiving care in an ESN led service (> 1 year) had significantly higher knowledge levels of epilepsy [t(493) = -4.914, p < .000]; more involvement in care [t (491) = -4.254, p < .000] higher satisfaction with emotional support [t (475) = -3.185, p=.002] and practical support [t (480) = -3.231 p<.001). No significant difference in QoL scores were reported [t (477) =.346, p=.729]. Qualitative findings from patient and carers’ views of the ESN role all support these positive findings. Findings from the case study suggest that ESNs have a significant clinical, audit and clinical leadership role. The research and professional leadership aspect of the role, while well developed by some of the ESNs, is at a developmental stage for others.Conclusions: Although no differences were reported in QoL scores, interview, observation and other case study findings demonstrate that patients receiving care in a service with an ESN report greater knowledge of epilepsy, involvement in own care and satisfaction with support offered, compared to those being cared for in a service without an ESN. The findings have significant implications for the strategic development and resourcing of the ESN role in the National Epilepsy Care Programme in Ireland.