Improving Self-Management
Another role that primary care can play is promoting self-efficacy among patients with epilepsy.
“Providers have historically tended to focus on medication adherence alone, ignoring other health enhancing behaviors, even just sleep hygiene,” Dr. Kobau said. But adequate sleep, regular exercise, a healthy diet, avoidance of tobacco and excessive alcohol, and stress management are all important for seizure management.
In 2007, CDC launched the Managing Epilepsy Well (MEW) Network, which has the mission of advancing self-management research in collaboration with patients with epilepsy as well as a broad range of healthcare providers. “It’s a patient-driven kind of approach consistent with community-based, participatory practice research,” said Dr. Kobau, who oversees the initiative.
The MEW network, which consists of six prevention research centers funded by CDC, has piloted and evaluated several evidence-based programs that can help patients better control their epilepsy.
One such intervention is Project Uplift, which delivers mindfulness-based cognitive-behavioral therapy in a virtual group setting. Behavioral therapy is important for people with seizure disorders, whose risk for depression is more than twice that of the general population. The initial trial found the intervention was effective in reducing depressive symptoms in participants, and research since has focused on adapting the program to provide culturally appropriate care to underserved populations. The eight sessions, held weekly, are available in both English and Spanish.
Another program, HOBSCOTCH, allows patients to meet one-on-one virtually with a trained coach to work on skills for improving attention and memory, common problems among people with epilepsy.
MINDSET involves a tablet-based clinical decision tool that patients can use to track their self-management behaviors, such as taking their medications, seizure triggers, symptoms of depression, and keeping their clinic appointments. It also helps them monitor whether they are getting adequate sleep, reducing their stress, and maintaining social networks. The tool generates a printable action plan for patients to prompt discussion and shared decision-making between patient and clinician to prioritize behavioral issues, set goals, and monitor changes over time.
Clinicians can refer patients to any of the MEW interventions, or patients can enroll themselves online.
Emerging Approaches
The AAN’s 2019 report promoted use of technological solutions to bridge the gap between primary care providers and scarce — as well as distant — neurologists. Many health systems support e-consults between clinicians, allowing simple discussions about medications and advice about testing recommended prior to a neurology visit. Initially developed for treatment for infection with hepatitis C virus, Project Extension for Community Healthcare Outcomes (ECHO) uses a central hub of specialists to support primary care providers via teleconference to conduct case reviews and didactic sessions.
Much of Dr. Joshi’s work has focused on ways to coordinate care to children who live far from a pediatric epilepsy center. In a previous position at the University of Michigan, her team was one of four sites funded by the AAP’s National Coordinating Center for Epilepsy to pilot an intervention using telehealth. Implemented in 2017-2019, the initiative used quality improvement methodology to explore a model where patients went to the office of their primary care provider so that both could participate in the call with a neurologist.
The strategy was successful, resulting in reduced out-of-pocket costs, missed school hours, and missed work hours. Patient satisfaction was high (97%), and more parents in the intervention group than the control group agreed that it was easier to obtain appointments with specialists (95% vs 65%, respectively).
And since the pandemic, in-home telehealth visits have become commonplace, adding to the potential convenience and cost savings of telemedicine.
CDC has invested in Project ECHO as a training program for nonspecialist providers to manage epilepsy. Based at the University of Cincinnati, the initial pilot from 2017 to 2019 trained primary care providers in Ohio and neighboring states using monthly 1-hour sessions via Zoom. According to Dr. Kobau, “Of those 164 primary care providers, 97% reported higher interest in improving their care of patients with epilepsy, and at least 98% reported that they were more confident in treating their patients with epilepsy.” Since that time, over 900 providers have received the training, which now attracts participants from all over the country.
Although the current burden of managing epilepsy now seems to be falling heavily on primary care providers, Dr. Lado said he believes they can provide useful insight into their patients’ history and needs: “I think they are in a unique and impactful position, mostly to refer those patients who are still having seizures.”
Additional Resources for Patients and Providers
- American Academy of Pediatrics National Coordinating Center for Epilepsy
- American Epilepsy Society (CME courses designed to designed to increase knowledge about epilepsy diagnosis, treatment, and management; seizure first-aid; epilepsy stigma; and social determinants of health for people with epilepsy)
- Centers for Disease Control and Prevention .
Dr. Joshi, Dr. Kobau, and Dr. Lado report no relevant financial relationships.
Dr. Thomas is a pediatrician and epidemiologist living in Portland, Oregon.
A version of this article appeared on Medscape.com .