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Stigma in Epilepsy in 2023: How Far Have We Come?
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In recent conversations with experts in epilepsy, the impact of stigmatization remains high for patients and ongoing efforts by clinicians to address this issue in the clinical setting has been underscored, despite the global lack of awareness about new treatments and other resources.
This piece is part of the This Year in Medicine series from our sister site, HCPLive®, and originally appeared there.
Epilepsy, a condition characterized by a lasting predisposition to generate spontaneous epileptic seizures, has several neurobiological, cognitive, and psychosocial effects that impact patients.1 One of the psychosocial effects, stigmatization, is a major contributor to the burden associated with the condition and it can also affect the families of those with the seizure disorder.2 Although there have been advancements in therapies to improve patient outcomes to, in turn, help improve the quality of life of patients and reduce stigma, it is still prevalent in many parts of the world.
There seems to be a lack of awareness of the treatment options that are available for patients and also of knowledge of resources to help patients who feel stigmatized in living with the condition. Despite this, the field of epilepsy has expanded its research in hopes of enhancing the lives of patients and reducing stigma. In recent conversations with NeurologyLive® over the course of the year, clinicians provided their insight on what stigma currently looks like, how it impacts the patients, and how to address it in the clinical setting.
Enacted and Felt Stigmas
There are 2 types of stigma that patients with epilepsy experience—“enacted stigma,” which refers to episodes of discrimination against patients with epilepsy; and “felt stigma,” which refers to the shame associated with being epileptic and the fear of enacted stigma.3 Thus, stigma does not only materialize in the form of other people’s feelings against a patient, but it also occurs in the feelings of the patients themselves. For the patient, the feeling of stigmatization may have manifold negative effects such as social isolation, low self-esteem, reduced quality of life, and worsening of seizures.4
These feelings, like having a low self-esteem, may stem from losing independence with certain activities such as driving, which can be dangerous to some patients if they have a seizure behind the wheel. In a review published in Epilepsy Currents, lead author Allan Krumholz, MD, the director of the Epilepsy Center and professor of neurology at University of Maryland School of Medicine, observed that driving is an important concern for providers who care for patients with epilepsy, enacting a desire for them to be well informed about relevant issues to properly manage their patients and protect themselves against lawsuits.5 The ability to not be codependent on others is a large part of feeling a higher quality of life for some patients with epilepsy, which, in turn, can reduce their feelings of stigma. Although, one solution is the use of new and effective antiseizure treatment to reduce the occurrence of seizures, and thus increase a patient’s ability to feel more confident in their own activities, such as driving.
Gregory Krauss, MD
“Many patients find having seizures, particularly if they're uncontrolled, stigmatizes them because it limits their opportunities at work, sometimes socially, they're not able to drive off. There’s an adverse effect of having seizures of stigma because you're in some way not able to take opportunities to drive, to socialize in the same way. Sometimes patients with recurring seizures, lose confidence or have mood problems,” Gregory Krauss, MD, professor of neurology at Johns Hopkins University School of Medicine, told NeurologyLive.
“All these things can set patients aside from what they potentially could do,” Krauss continued. “I think it’s very important for patients not to give up and realize there's new treatments, potentially curative surgery, potentially curative, or new therapies that can make them seizure free. All those things that can be used to minimize adverse effects, get rid of the seizure, stop them completely, that can remove stigma because the epilepsy is controlled. I think that should be the goal, no adverse effects, no seizures, that will reduce stigma.
“I had a patient who was having several seizures a month and couldn't farm. He would have his wife drive him to the restaurant to meet the buddies, and he would get in the driver's seat and pretend he had driven there. He's now seizure free for about 6 years on a new treatment. He has confidence, he farms, and he drives. He's also teaching his kids to drive. These things really help in terms of minimizing stigma, which is to control seizures, and not to suffer adverse effects as you're doing it. But certainly, some people do not have controlled seizures, and it's just a medical condition. It doesn't constitute who the patients are. It's something to be dealt with and move on, try to be part of normal activities with some limitations such as driving,” Krauss said.
Nonpharmacologic Approaches to Stigma Reduction
Reducing stigma among patients with epilepsy does not have to always be done through effective pharmaceutical approaches, it can also be done through other ways such as behavioral and physiological interventions. In a systematized literature review published in Epilepsy & Behavior conducted by lead author Payal Chakraborty, PhD, postdoctoral research fellow in the department of population medicine at Harvard Medical School, and colleagues, 4 broad categories of stigma interventions were identified by the investigators. These categories included public awareness interventions, policy-based interventions, school-based interventions, and interventions that targeted the patients themselves, as well as their caregivers and their peers.6 These interventions help to empower the patients and bring a sense of positivity in the patient community. Interventions that involve policy, awareness, and academics all contribute to creating a safe space for patients with epilepsy so they can avoid not feeling judged or isolated.
Interventions that target the patients themselves are another type of method to reduce stigma, such as physical approaches like exercise regimens. One exercise approach used among these patients is yoga, which requires mindfulness of the body and brain while doing stretching positions. Recent research shows that this type of exercise can alleviate the burden of epilepsy and improve the overall quality of life in patients by reducing perceived stigma.7 The exercise can be done anywhere, as well, whether it is performed remotely from watching a stream of a yoga class or going to one in person. There are also benefits to doing these types of exercises in a community setting to feel not only more connected to oneself but also to the other people.8 Although there are different types of interventions to address stigma in epilepsy, the effectiveness for reducing it depends on the individual person and thus should be a targeted, personalized intervention.
Lara V. Marcuse, MD
“Stigma must be specifically addressed with each person. It can be a true barrier to appropriate care. Our support groups really help with stigma as the peer-to-peer connection can make people feel less alone. Epilepsy is particularly susceptible to stigma as a seizure is a profound loss of control and a big seizure can look terrifying, which historically has been thought of as a spiritual illness (possession by the devil). Constant raising of awareness of epilepsy as a medical condition, education of the patient and their families and willingness to talk to other people that are important to the patient helps with stigma. Facing the truth, naming it, and helping with fear improves care because it allows patients to really discuss their concerns and dig into treatment, “ Lara V. Marcuse, MD, and Madeline Fields, MD, both codirectors of the Mount Sinai Epilepsy Program, The Icahn School of Medicine at Mount Sinai, told NeurologyLive.
Community holds an important role for patients who are living with a difficult neurological condition such as epilepsy because of the socialization and understanding that can be built in those settings. There are several patient advocacy organizations that share resources for those looking to relate to other people and learn more on how they can personally manage their condition, besides simply having a conversation about it with their provider. Many of these patient foundations have conducted research, awarded grants, and have supplied patients with the information they may need to seek better care for themselves.
These organizations also promote awareness for the condition, especially by holding awareness events during the year or at medical conferences by helping to share new updates on potential therapies. They also help patients to get connected to support group programs which can be successfully implemented in the community and are associated with improved outcomes in adults with epilepsy—particularly those with mental health conditions.9 In other research, findings showed that group participation in general demonstrated significant benefit among adults with long-term disease in aspects of pain, psychological outcomes, self-efficacy, self-care, and quality of life.10 The epilepsy community that is put together by not only the organizers but other stakeholders has helped patients in being more empowered to manage their condition through awareness brought by education to reduce stigma.
Danielle Becker, MD, MS, FAES
“I think a lot of it is education. It's education for providers to talk about these new opportunities and it's also education for patients and caregivers to learn about these new opportunities to not give up and strive for better seizure control,” Danielle Becker, MD, MS, FAES, division director of epilepsy and associate professor of neurology at The Ohio State University Wexner Medical Center, told NeurologyLive. “The goal would be to strive for zero seizures, if possible, and for providers and patients as well as caregivers to learn that there are new opportunities coming out there. Even if opportunities may not have worked in the past, newer developments may work. As far as stigma, I really think it's about education, about how to improve quality of life, reduce drug load, and reduce cognition. How to normalize the lives of patients potentially with epilepsy, but also try to give back some of that independence that's been taken away.”
Addressing Stigma With In-Clinic Communication
In the clinical setting, clinicians can help by emphasizing the importance of the preferred style of communication with patients, making sure that they feel more in control of the decisions that they want to make moving forward with their treatment. In addition, having effective communication between both the provider and patient is recognized as of the utmost importance to improve the quality of care for the patients with epilepsy.10 In performing this communication, physicians can increase their patients’ knowledge and perceptions about epilepsy—but it will require a significant increase in ongoing efforts for educational programs to eliminate stigma and improve access to care.11
In a qualitative study published in BMC Neurology, lead author Jerry Paul K. Ninnoni , PhD, the head of department of mental health at the University of Cape Coast School of Nursing and Midwifery in Cape Coast, Ghana, observed that patients who have learning disabilities and live with epilepsy (as well as their caregivers) would like to be more informed about their disease to be more involved in decision making and management of the condition.12 Another form of effective communication is motivational interviewing, which is a method of motivating patients to engage in a behavior modification process to have an empowering conversations with patients.13 Experts in epilepsy have highlighted that patients still face a lot of unmet needs in terms of treatment and diagnosis, but there is also the unmet need of reducing self-felt stigma. Therefore, a shift in communication methods in the clinic could help these patients feel more empowered to not only control their seizures, but also live their lives with confidence.
Pavel Klein, MD
“Epilepsy still does carry stigma with it, [but] maybe less so in the US and Europe than in other parts of the world. In India, it's still a reason to abandon marriage—if either party has epilepsy—and so it is in many parts of the world. So being aware of it as a disease; that is, a disease in the same way as diabetes [is], but in a way with a greater emotional impact because of the tremendous insecurity that you have as a patient,” Pavel Klein, MD, director of the Mid-Atlantic Epilepsy & Sleep Center and adjunct associate professor of neurology at George Washington University, told NeurologyLive.
“For instance,” Klein said, “knowing that at any point you could lose consciousness, fall to the ground, look unpleasant with writhing and foaming at the mouth, or even urinating on yourself in a store while shopping. All these things that can happen, and you don't know when they could happen. We can live in fear of it all the time. Having other people, family, friends, schools, employment, being aware of that and being supportive is very important.”
Moving Ahead
Looking to the future, these aforementioned strategies are effective ways to reduce stigma among patients with epilepsy. This includes the administration of effective therapies or nonpharmalogical treatments to help improve mood. There is also the involvement of patient advocacy organizations that help to connect patients with others who may be experiencing similar medical issues with their condition and offer them resources for their care journey. In addition to patients speaking with others with epilepsy, there is also a need for effective communication between the clinicians. Having a clear line of communication, and using tactics like motivational interviewing, can help the patient recognize that they have the power to manage their seizures and live a higher quality of life. All of these aspects for reducing stigma are underscored by clinicians in the field of epilepsy and are strongly recommended for new year and beyond—particularly in a world where treatments can dramatically alter the lives of patients, even those with refractory epilepsy.
“It's remarkable how in this day of instant communication across the globe, there is still a lack of awareness of new treatments both among healthcare professionals and patients. It is relevant for general practitioners to be aware of these new treatment options that really can put stay to the disease. Many physicians think that if you have 1 seizure a month, it's not a big deal. They may consider that the patient is controlled enough, but it is a big deal,” Klein said.
“Making physicians and healthcare providers realize that there is a possible option of using treatment that can stop the seizure altogether is an option there. I also think it is a very important goal to strive for in terms of educating society, and then the same goes at the other end of the spectrum. I think patients should be aware that there are options—and if they're not being treated with those, with all the options that are out there, it's not right. General awareness of both epilepsy to reduce the stigma, but also of change in the treatment options, such that previously resistant refractory epilepsy that could now potentially be successfully treated, is important,” he added.
