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

Abstract

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

“…We found psychological distress was most associated with lower QoL in our group of PWE . There is no literature evidence to suggest that a solely educational intervention has ever changed QoL after 12 months in people with epilepsy . In previous trials participants have been followed for no longer than 6 months, and results were negative for total mean QoL changes, including in the MOSES trial .…”

“…We recruited a large group of adults with poorly controlled epilepsy from routine specialist clinics, in a metropolitan area, featuring multiethnicity, high resident turnover, and social deprivation. Our recruitment and retention rates were relatively high, compared to trials with volunteer groups, with limited ethnic variation and little social deprivation . Therefore bias was reduced, and our evidence can be generalized to similar populations in resource‐rich countries.…”

“…This is the largest RCT conducted thus far on a discrete self‐management education course for people with epilepsy . We successfully recruited our required sample size and had high follow‐up rates indicating that our results were not underpowered.…”

“…An important feature of PWE and persistent seizures is the high prevalence of psychological distress, which is also a major correlate of QoL. A few small trials suggest that cognitive behavioral therapy or acceptance and commitment therapy might improve outcomes, including QoL . High quality trials of psychological treatments for PWE are a priority in the future.…”

“…In England, the epilepsy death rate is rising, and compared to people with epilepsy living in the least‐deprived areas, those living in the most‐deprived areas experience a death rate 3 times as high . It is therefore vital to improve on health care for people with epilepsy …”