Objective: A web-based intervention was developed to support epilepsy self-management. A mixed methods study was undertaken to evaluate the intervention's extent of utilization, acceptability and preliminary effects, and to assess user perception of it.
Methods: First, a pilot parallel-group randomized controlled trial was conducted with a convenience sample of 75 adult with epilepsy who had Internet access allocated on a 1:1 ratio into an experimental group that received the intervention (experimental group (EG), n = 37) and a control group invited to consult epilepsy-related websites (control group (CG), n = 38). Self-management, knowledge, and quality of life (QoL) outcomes were measured at baseline and one and three months later. Descriptive statistics of extent of utilization and acceptability were computed. Linear mixed models were conducted to assess change in outcomes over time and between groups. Subsequently, an exploratory qualitative study was carried out with 15 EG participants. Qualitative data were subjected to thematic analysis.
Results: Participants had a mean age of 40 years (range: 18-73), 45% were female, and mean time since diagnosis was 18 years (range: less than a year to 60 years). In the EG, 70% of the participants completed the intervention. Regarding acceptability, participants (n = 25) were satisfied overall (88%) and found content clear (92%) and the information reliable (100%). EG participants experienced greater improvement in QoL compared with CG participants, least-squares means (95% CI): 0.41 (0.06, 0.76). Three major themes emerged from the interviews (n = 15): intervention provides certain personal benefits; clinical content is of general interest but should be tailored; and intervention should target "new" patients early in the care trajectory.
Discussion: The web-based intervention shows promise in terms of usefulness in enhancing QoL, and user experience showed that it is acceptable and helpful. It could constitute a complementary service in support of existing services for people with epilepsy and their families.
Keywords: Epilepsy; Qualitative Research; Quality of life; Randomized control trial; Self-management; Web-based intervention.
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