LOS ANGELES — A new online intervention called RISE ABOVE aims to help people with epilepsy overcome internalized stigma, and a small, open-label pilot study showed that it is well accepted and hinted at potential efficacy.
“Global estimates indicate that one out of two [people with epilepsy] are affected by stigma in some way, and I think this is critical. Seizures last seconds to minutes, but this internalized aspect of shame, embarrassment, fear…that lingers and that has broad effects on folks’ relationships, work, school success, and health,” said Seth Margolis, PhD, an assistant professor of psychiatry and human behavior at Brown University in Providence, Rhode Island, during a presentation of the results on December 7 at American Epilepsy Society (AES) 78th Annual Meeting 2024.
“When I speak with my patients, oftentimes they won’t realize how much stigma they’re actually experiencing and how much they have a role in perpetuating the thoughts, feelings, and reactions that go along with their experience,” said Margolis.
Online Intervention Helps Patients Overcome Stigma
RISE ABOVE teaches people with epilepsy to reduce internalized stigma through sequential, interactive modules that teach self-management through demonstration and practice and stigma recognition. It adapts stories of actual people living with epilepsy, allowing the user to identify with stigmatized characters and recognize stigma from a different perspective. “Then they engage in what we call the ‘take another look module,’ where they’re taught a series of cognitive behavioral strategies to identify the unbalanced nature of certain stigmatized thoughts that they may be applying to themselves, and learn to reframe those thoughts and make them more balanced, followed by successive learning of problem-solving skills that then they apply to character stories before applying it to their own lives,” said Margolis.
The modules include stress management, recognizing stigma, cognitive behavioral therapy strategies to address stigmatized thoughts, and problem-solving skills.
The researchers conducted a feasibility study in 20 people (mean age, 47.30 [range, 22-67] years; 50% women) living with epilepsy in 13 US states, and they were evenly split between controlled and uncontrolled seizures. The rate of unemployment was 30%, and 30% were Black, Indigenous, or people of color.
The program starts with an orientation video, and the researchers asked participants to rate their expectations for the program based on what they had seen. “We had very favorable ratings on the front end,” Margolis said while showing a slide that showed participants expected to experience improvement from each of the four modules, with average endorsement ranging from 65% to 72.1%. They would recommend each module to a friend between 75% and 81.9% per module, and they said that the module seemed to them like a logical way to tackle stigma ranging between 80.2% and 84.2% among the modules.
After completing a module, the researchers asked them a similar series of questions. “Again, we saw very high marks across all modules,” said Margolis, illustrating it with a slide showing 90%-100% of the participants found the modules understandable, 80%-95% said they were helpful, 80%-90% planned to apply the material to their lives, and 85%-100% would recommend the module to others.
Overall, treatment satisfaction was 85%.
Outcomes and Follow-Up
The researchers then looked at efficacy, using change from baseline in psychosocial outcomes such as perceived stress, satisfaction with social roles and activities, perceived rejection, self-efficacy, and perceived loneliness. “We had large effect sizes of about a standard deviation or more in stigma, stress, and satisfaction with social roles; medium-sized effects on perceived rejection and self-efficacy; and a trend with perceived loneliness,” said Margolis.
In another analysis conducted 6 months after completion of the intervention, effects on stigma and stress were maintained, although there was some attenuation of satisfaction with social roles and activities, from a large to medium effect size, and self-efficacy dropped to a small effect size. However, the researchers saw an increased effect on perceived loneliness over time, while the effect on perceived rejection became nonsignificant. “There was attenuation, but it wasn’t so much that it was significantly worse from after they actually completed the intervention. We feel really good about these initial results,” said Margolis.
The group now plans to do a qualitative analysis of factors that promote or inhibit benefit from the intervention and to modify it iteratively before embarking on a randomized controlled trial.
During the Q&A period following the talk, session moderator Aline Herlopian, MD, an associate professor of neurology at Yale School of Medicine, Yale University, New Haven, Connecticut, asked how effective such an intervention can be in the face of work environments that don’t make accommodations for people with epilepsy, and can even push them out of their jobs in some cases. “How are we going to make this effective when that environment isn’t changing?” she asked.
“I guess what I would want to do in a case like that is look for opportunities where someone has more control. For example, did that bleed over into their relationships? Did that bleed over into looking for alternate employment or volunteer experiences? Did that discrimination make it so that now they’ve internalized it so deeply that they are paralyzed by it [and] they’re stuck? I want to help get people unstuck. It might just require a different perspective and an alternate set of approaches,” said Margolis.
In an interview after the session, Herlopian expanded on her question. She recalled conversations with families of children with epilepsy, who ask her if their child is a normal citizen. “They have instances where they are overprotected. Does overprotectiveness make them stigmatized? For example, they cannot drive [due to fears of a seizure],” she said.
Margolis and Herlopian had no relevant financial disclosures.