Self-Management education for adults with poorly controlled epILEpsy (SMILE-UK): Platform presentation

Introduction Seizures are controlled with medication for 60-70% of people with epilepsy (PWE). For those with recurring seizures, self-management is important to prevent risks including injury, psychological co-morbidity and premature death. PWE want to know more about self-management but little training has been tested or provided, and none in the UK. In this context, we tested a two-day course delivered in groups for UK PWE with recurring seizures. Objective To evaluate by a randomized-control trial Self-Management education for adults with poorly controlled epILEpsy (SMILE-UK). Methods Patients with ≥ 2 seizures in the previous year were randomised into the treatment or wait-listed control group and followed-up for 1 year. The primary outcome was quality of life measured by QOLIE-31-P. Secondary outcomes included: seizure frequency, anxiety and depression, stigma, self-mastery. Participants were purposefully selected for interview <6 months after the course. Results 404 PWE participated, with a median 18 years since diagnosis, 54% were female, and 69% experienced ≥10 seizures in the prior year. Mean QOLIE-31-P score was 66 at enrolment. There was no difference between the two groups at baseline or 1 year later. In-depth interviews showed facilitated group learning helped participants overcome their sense of isolation, open up, discuss feelings, and improve confidence whilst comparing attitudes and practice. Conclusion People with drug-resistant epilepsy need to find ways to self-manage. Group education courses offer them the opportunity to learn from experts, and by talking together, to overcome their sense of isolation and build confidence. However, they are insufficient to change quality of life after 1 year. Trial registration: ISRCTN57937389. Funding: NIHR-HTA 09/165/01. The views and opinions expressed in this evaluation are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.