Gabriella Wojewodka

A systematic review and narrative synthesis of group self-management interventions for adults with epilepsy

BackgroundEpilepsy is a serious and costly long-term condition that negatively affects quality of life, especially if seizures persist on medication. Studies show that people with epilepsy (PWE) want to learn more about the condition and some educational self-management courses have been trialled internationally. The objectives of this review were to evaluate research and summarise results on group self-management interventions for PWE.MethodsWe searched Medline and PsycINFO for results published in English between 1995 and 2015. Only studies evaluating face-to-face, group interventions for adults with epilepsy were included. Heterogeneity in study outcomes prevented the carrying out of a meta-analysis; however, a Cochrane style review was undertaken.ResultsWe found eleven studies, nine of which were randomised controlled trials. There were variable standards of methodological reporting with some risk of bias. Seven of the studies used quality of life as an outcome, with four finding statistically significant improvements in mean total score. Two found an improvement in outcome subscales. One study included some additional semi-qualitative data.ConclusionsWe identified promising trends in the trials reviewed. In particular, there were significant improvements in quality of life scales and seizure frequency in many of the interventions. However, considerable heterogeneity of interventions and outcomes made comparison between the studies difficult. Courses that included psychological interventions and others that had a high number of sessions showed more effect than short educational courses. Furthermore, the evidence was predominantly from pilot studies with small sample sizes and short follow-up duration. Further research is needed to better evaluate the role of group self-management interventions in outpatient epilepsy management.

The effectiveness of a group self-management education course for adults with poorly controlled epilepsy, SMILE (UK): A randomized controlled trial

Epilepsy is one of the most common neurological conditions affecting about 1% of adults. Up to 40% of people with epilepsy (PWE) report recurring seizures while on medication. And optimal functioning requires good self‐management. Our objective was to evaluate a group self‐management education courses for people with epilepsy and drug‐resistant seizures by means of a multicenter, pragmatic, parallel group, randomized controlled trial.

Self-Management education for adults with poorly controlled epILEpsy [SMILE (UK)]: a randomised controlled trial

BACKGROUND Epilepsy is a common neurological condition resulting in recurrent seizures. Research evidence in long-term conditions suggests that patients benefit from self-management education and that this may improve quality of life (QoL). Epilepsy self-management education has yet to be tested in a UK setting. OBJECTIVES To determine the effectiveness and cost-effectiveness of Self-Management education for people with poorly controlled epILEpsy [SMILE (UK)]. DESIGN A parallel pragmatic randomised controlled trial. SETTING Participants were recruited from eight hospitals in London and south-east England. PARTICIPANTS Adults aged ≥ 16 years with epilepsy and two or more epileptic seizures in the past year, who were currently being prescribed antiepileptic drugs. INTERVENTION A 2-day group self-management course alongside treatment as usual (TAU). The control group received TAU. MAIN OUTCOME MEASURES The primary outcome is QoL in people with epilepsy at 12-month follow-up using the Quality Of Life In Epilepsy 31-P (QOLIE-31-P) scale. Other outcomes were seizure control, impact of epilepsy, medication adverse effects, psychological distress, perceived stigma, self-mastery and medication adherence. Cost-effectiveness analyses and a process evaluation were undertaken. RANDOMISATION A 1 : 1 ratio between trial arms using fixed block sizes of two. BLINDING Participants were not blinded to their group allocation because of the nature of the study. Researchers involved in data collection and analysis remained blinded throughout. RESULTS The trial completed successfully. A total of 404 participants were enrolled in the study [SMILE (UK), n = 205; TAU, n = 199] with 331 completing the final follow-up at 12 months [SMILE (UK), n = 163; TAU, n = 168]. In the intervention group, 61.5% completed all sessions of the course. No adverse events were found to be related to the intervention. At baseline, participants had a mean age of 41.7 years [standard deviation (SD) 14.1 years], and had epilepsy for a median of 18 years. The mean QOLIE-31-P score for the whole group at baseline was 66.0 out of 100.0 (SD 14.2). Clinically relevant levels of anxiety symptoms were reported in 53.6% of the group and depression symptoms in 28.0%. The results following an intention-to-treat analysis showed no change in any measures at the 12-month follow-up [QOLIE-31-P: SMILE (UK) mean: 67.4, SD 13.5; TAU mean: 69.5, SD 14.8]. The cost-effectiveness study showed that SMILE (UK) was possibly cost-effective but was also associated with lower QoL. The process evaluation with 20 participants revealed that a group course increased confidence by sharing with others and improved self-management behaviours. CONCLUSIONS For people with epilepsy and persistent seizures, a 2-day self-management education course is cost-saving, but does not improve QoL after 12-months or reduce anxiety or depression symptoms. A psychological intervention may help with anxiety and depression. Interviewed participants reported attending a group course increased their confidence and helped them improve their self-management. FUTURE WORK More research is needed on self-management courses, with psychological components and integration with routine monitoring. TRIAL REGISTRATION Current Controlled Trials ISRCTN57937389. FUNDING This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 22, No. 21. See the NIHR Journals Library website for further project information.

PO055 Results of an rct of self-management education in epilepsy: smile-uk

Introduction People with epilepsy (PWE) want to learn about self-management. No course tested in UK. Methods Mixed-methods RCT evaluating group 2 day self-management education for poorly controlled epilepsy. Participants’ characteristics described at baseline, a sub-sample purposefully interviewed at 6 months, outcomes analysed at 1 year. Outcomes: primary, quality of life (QOLIE-31-P); secondary: seizure frequency, psychological distress, self-mastery and felt-stigma. Results Enrolled 404 participants with median 18 years since diagnosis, 69%≥10 seizures in the prior year, 46% reported co-morbidity, 64% current anxiety, 28% borderline or case-level depression, and 63% felt stigmatised. Participants’ mean QOLIE-31-P was 66 out of 100 (range 25–99). In decreasing order, associated with low QOLIE-31-P: depression, low self-mastery, anxiety, feeling stigmatised, history of medical/psychiatric comorbidity, low self-reported medication adherence, and greater seizure frequency. Process evaluation interviews found that PWE felt socially isolated. They gained confidence from interactive groups. Results at 1 year outcome will be presented. Conclusions PWE and persistent seizures experience low QoL, with psychological and social characteristics more closely associated than clinical characteristics. Group learning helps PWE overcome isolation and gain confidence. The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the HTA, NIHR, NHS or the Department of Health.

AN RCT OF SELF-MANAGEMENT EDUCATION IN EPILEPSY: PARTICIPANTS AT BASELINE

Background We are doing a multicentre, randomised controlled trial evaluating the effectiveness and cost-effectiveness of a two-day Self-Management education course for epILEpsy (SMILE (UK)), which was developed in Germany (MOSES). Methods We recruited participants attending epilepsy clinics in SE England, reporting 2 or more seizures in the prior year. The primary outcome is patient-reported quality of life. Secondary outcomes include seizure frequency, psychological distress, and stigma among other variables. This presentation describes important characteristics of participants at baseline. Results Of 404 participants recruited, mean age was 42 years, 75% were of white ethnicity, and 46% were male. Epilepsy had been diagnosed a median of 18 years previously, 72% reported one or more seizures in the prior month, and 46% reported another significant medical and/or psychological condition. Psychological distress symptoms endorsed on the Hospital Anxiety and Depression Scale suggest case or borderline case rates of Anxiety of 54%, and of Depression of 28%. The average epilepsy-specific quality-of-life (QOLIE-31) score was 66 (maximum 100). Discussion This group of participants recruited via epilepsy clinics had chronic, poorly controlled epilepsy. About half reported other significant conditions and borderline or case-level symptoms of anxiety. The relationship between these and other characteristics will be presented.