NEW ORLEANS – A self-management program that focused on medication adherence, sleep, nutrition, and stress reduction was associated with decreased seizures and improved quality of life for adults with epilepsy.
SMART (Self‐management for people with epilepsy and a history of negative health events) also was associated with improved depression scores and overall quality of life measures in participants, compared with a wait-listed control group,said at the annual meeting of the American Epilepsy Society.
“I believe what we’re seeing is a result of improved self-management,” said Dr. Sajatovic, the Willard Brown Chair in Neurological Outcomes Research at Case Western Reserve University, Cleveland. “This is multimodal, including better medication adherence, which in turn is related to better communication with the clinician. For example, if patients are not sleeping well or their medicine makes them nauseated or they experience sexual dysfunction, we encourage them to talk to their docs about what they can live with, and what they can’t.”
Presented as a poster during the meeting, the SMART study was also published in.
SMART is an 8-week online educational program delivered by a nurse educator and a “peer educator,” a person with epilepsy who has had at least three negative health events. The first session is an in-person visit during which the team gets acquainted and discusses goals. The remaining sessions are self-paced and delivered on computer tablets provided by the investigators.
SMART didn’t just focus on the physical issues of living with epilepsy, Dr. Sajatovic said in an interview. Sessions also discussed the stigma still associated with the disorder, and myths that unnecessarily inflate perceptions. Discussions include goal setting, epilepsy complications and how to manage them, the importance of good sleep hygiene, problem-solving skills, nutrition and substance abuse, exercise, and how to deal with medication side effects.
“One thing we really stressed was sharing information in a way that was accessible to all patients and fostered self-motivation,” she said. “Most of our participants had never been in a program like this before. It was very empowering for many.”
The researchers chose participants who were socioeconomically challenged for this project; 88% made less than $25,000 per year and 74% were unemployed. The mean age of participants was 41 years, 70% were black, and most had been living with epilepsy at least half of their life. About 70% lived alone, and 70% had experienced at least one seizure within the month before enrolling. Mental health comorbidities were common; 69% had depression, 32% had anxiety, and 13% had PTSD.
The study enrolled 120 people, who were evenly divided between the intervention group and the wait-list group. The primary outcome was the change in total negative health events from baseline to the study’s end. Negative health events were seizures and ED or hospital admissions for any other causes including attempts at self-harm, falls, and accidents.
Secondary outcomes included changes in depression scores as measured by the Montgomery-Åsberg Depression Rating Scale and the 9-item Patient Health Questionnaire. Quality of life was measured using the 10-item Quality of Life in Epilepsy; functional status was measured using the 36-Item Short-Form Health Survey.
At baseline, the total mean 6-month negative health events count was 15, with 13 events being seizures. The other events were hospital or ED visits for other reasons.
At the end of the study, the intervention group experienced a significant mean decrease of 10 fewer negative health events, compared with a decrease of 2 in the wait-listed group. This was largely driven by a mean of 7.8 fewer seizures in the active group, compared with a decrease of about 1.0 in the wait-listed group. The 6-month ER and hospitalization counts did not significantly change.
Among the secondary outcomes, depression, overall health, and quality of life all improved significantly in the intervention group, compared with the wait-listed group. The intervention group also had significant decreases in depression measures and improvements in daily function measures, Dr. Sajatovic said.
“It was so gratifying to see this. Most of our participants had never been in a program like this before. It was a chance for them to take control of their epilepsy, instead of simply having it control them,” she said.
This study was supported by a grant from the Centers for Disease Control and Prevention. Dr. Sajatovic had no financial disclosures related to this presentation.