Ensuring Continuity of Care for Rare, Catastrophic Forms of Epilepsy During COVID-19


Families of patients with Dravet syndrome and other rare epileptic burdens have lived under amplified fear this year. That is why telemedicine is a more vital tool than ever.

Joseph Sullivan, MD

Joseph Sullivan, MD

This year has been a whirlwind for patients seeking medical care and treatment. The impact of the coronavirus 2019 (COVID-19) pandemic has taken its toll on patients, caregivers, healthcare professionals, and their families alike.

These challenges are intensified, however, when it comes to rare and often catastrophic epilepsies that can be very difficult to treat, such as Dravet syndrome or Lennox-Gastaut syndrome (LGS), both of which are infant- and childhood-onset diseases. Not only is it critically important for these patients to receive a precise diagnosis as early as possible so that treatments can be tailored to achieve the best outcomes, it’s also crucial to ensure they receive timely ongoing care.

Families living with rare epilepsies will tell you how socially isolating these diseases are. Unpredictable and prolonged life-threatening seizures unfortunately are very common for these patients, who experience frequent medical emergencies, lifelong developmental and behavioral impairments, and an increased risk of death.

As a result, even during the best of times, these patients’ families avoid everyday activities that could trigger seizures due to overexcitement, overheating, or exposure to illnesses like the common cold, in order to keep their loved one safe.

Imagine, then, how living under the shadow of COVID-19 has magnified the fears and concerns of these normally strong, resilient families, with many expressing increased feelings of depression and isolation. In the face of this pandemic, they are exercising extra caution and limiting patients’ visits even to clinics and emergency rooms to reduce the risks of contracting the novel coronavirus.

Mary Anne Meskis

Mary Anne Meskis

It’s important to reinforce for these families that hospitals and doctors’ offices are safe for both routine visits and emergencies. Fortunately, patients now have another safe option: telemedicine. What began as a pandemic necessity has become a powerful benefit. In fact, many epilepsy specialists are already providing the majority of their patients’ care though telemedicine. This dramatic shift has made it easier for health care providers, families, and patients to remain engaged with each other and to continue monitoring the patient’s individual treatment needs.

Telemedicine is helping the Dravet syndrome and other rare disease communities to keep medical appointments, investigate medications, enroll in clinical studies, and even start new treatments. Physicians also find telemedicine visits useful for detailed discussions about the risks and benefits of trying new anti-seizure medications that offer hope for improved seizure control and quality of life. Robust discussions can happen via telemedicine just as easily as they do during an in-person clinic visit.

With new medications recently approved specifically for some rare epilepsy syndromes, and healthcare providers learning more about their efficacy and side effects, treatment paradigms are evolving—suggesting that new levels of seizure control could become the standard for more Dravet syndrome and other rare epilepsy patients. Consultations via telemedicine help ensure caregivers have all the available information they need to make important decisions about their loved one’s care. In addition, physicians in healthcare systems and offices that use electronic medical records can deploy these systems to electronically prescribe new medications and order baseline laboratory or clinical assessments that may be needed.

Historically, both new and existing patients would be scheduled many months in advance for appointments. If a more urgent visit was needed, however, this was not always possible due to the availability of clinic space or caregiver and provider schedules not aligning. Now, a visit can be done via telehealth where an in-person physical exam is not necessary, allowing providers to “squeeze” in a 30-minute telehealth visit on a day when they ordinarily would not have had available time. This also saves families many hours of travel time, missed work, and having to potentially plan for the care of other family members and siblings. All these factors taken together have resulted in an increase in overall monthly visits for some epilepsy practices and the feedback from both patients and providers has been overwhelmingly positive.

Even with the pandemic, it’s important for families of rare epilepsy patients to continue to advocate for the best care possible, including referrals to specialists who may be more knowledgeable about specific rare epilepsies. Conferring with these specialists via telemedicine is another way that digital technologies are helping families keep up with the latest disease insights and treatment approaches during the pandemic. And for times when a second opinion may be needed, telemedicine provides ready access to the academic centers where many of these specialists practice, without the need to travel long distances.

Before the pandemic, our patient community had expressed interest in telemedicine as an alternative for in-person visits but have been frustrated with the lack of a set coverage standard with private health insurance providers.

Patients with Dravet syndrome are prone to increased seizures during an illness. Being able to avoid in-person visits to hospitals or clinics for routine care during times of higher risk of infection, such as cold and flu season, would be optimal. And, since many of our patient families can travel hours to see their child’s specialists, being able to do some appointments via telemedicine takes away the additional financial burden caused by missed work and travel expenses.

Telemedicine gives families the added support and contact with healthcare providers that they need while navigating the challenges of rare disease care during unprecedented times. After the pandemic passes, many experts predict that telemedicine will remain as the new normal for many medical consultations—eliminating common barriers for patients, their families, and providers alike.

Joseph Sullivan, MD, is from the UCSF Benioff Children’s Hospital Pediatric Epilepsy Center of Excellence.

Mary Anne Meskis, is the Founding Member and Executive Director, Dravet Syndrome Foundation.

The views expressed in this piece reflect those of the authors, not necessarily those of the publication.

Healthcare providers and experts interested in responding to this piece or being published on HCPLive can contact the staff here.

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