Can an epilepsy nurse specialist-led self-management intervention reduce attendance at emergency departments and promote well-being for people with severe epilepsy?:A non-randomised trial with a nested qualitative phase

Objectives: To (1) describe the characteristics and service use of people with established epilepsy (PWE) who attend the emergency department (ED); (2) evaluate the economic impact of PWE who attend the ED; (3) determine the effectiveness and cost-effectiveness of an epilepsy nurse specialist (ENS)-led self-management intervention plus treatment as usual (TAU) compared with TAU alone in reducing ED use and promoting well-being; (4) describe patients' views of the intervention; and (5) explore their reasons for attending the ED. Design: Non-randomised trial with nested qualitative study. Setting: The EDs of three inner London hospitals. The EDs each offer similar services and support a similar local population, which made a comparison of patient outcomes reasonable. Participants: Adults diagnosed with epilepsy for ≥ 1 year were prospectively identified from the EDs by presenting symptom/discharge diagnosis. We recruited 85 of 315 patients with 44 forming the intervention group and 41 the comparison group. Intervention: Intervention participants were offered two one-to-one outpatient sessions delivered by an ENS who aimed to optimise self-management skills and knowledge of appropriate emergency service use. The first session lasted for 45–60 minutes and the second for 30 minutes. Main outcome measures: The primary outcome was the number of ED visits that participants reported making over the 6 months preceding the 12-month follow-up. Secondary outcomes were visits reported at the 6-month follow-up and scores on psychosocial measures. Results: In the year preceding recruitment, the 85 participants together made 270 ED visits. The frequency of their visits was positively skewed, with 61% having attended multiple times. The mean number of visits per participant was 3.1 [standard deviation (SD) 3.6] and the median was two (interquartile range 1–4). Mean patient service cost was £2355 (SD £2455). Compared with findings in the general epilepsy population, participants experienced more seizures and had greater anxiety, lower epilepsy knowledge and greater perceived stigma. Their outpatient care was, however, consistent with National Institute for Health and Clinical Excellence recommendations. In total, 81% of participants were retained at the 6- and 12-month follow-ups, and 80% of participants offered the intervention attended. Using intention-to-treat analyses, including those adjusted for baseline differences, we found no significant effect of the intervention on ED use at the 6-month follow-up [adjusted incidence rate ratio (IRR) 1.75, 95% confidence interval (CI) 0.93 to 3.28] or the 12-month follow-up (adjusted IRR 1.92, 95% CI 0.68 to 5.41), nor on any psychosocial outcomes. Because they spent less time as inpatients, however, the average service cost of intervention participants over follow-up was less than that of TAU participants (adjusted difference £558, 95% CI –£2409 to £648). Lower confidence in managing epilepsy and more felt stigma at baseline best predicted more ED visits over follow-up. Interviews revealed that patients generally attended because they had no family, friend or colleague nearby who had the confidence to manage a seizure. Most participants receiving the intervention valued it, including being given information on epilepsy and an opportunity to talk about their feelings. Those reporting most ED use at baseline perceived the most benefit. Conclusions: At baseline, > 60% of participants who had attended an ED in the previous year had reattended in the same year. In total, 50% of their health service costs were accounted for by ED use and admissions. Low confidence in their ability to manage their epilepsy and a greater sense of stigma predicted frequent attendance. The intervention did not lead to a reduction in ED use but did not cost more, partly because those receiving the intervention had shorter average hospital stays. The most common reason reported by PWE for attending an ED was the lack of someone nearby with sufficient experience of managing a seizure. Those who attended an ED frequently and received the intervention were more likely to report that the intervention helped them. Our findings on predictors of ED use clarify what causes ED use and suggest that future interventions might focus more on patients' perceptions of stigma and on their confidence in managing epilepsy. If addressed, ED visits might be reduced and efficiency savings generated. Trial registration: Current Controlled Trials ISRCTN06469947. Funding: This project was funded by the NIHR Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 1, No. 9. See the HSDR programme website for further project information