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The approximately 2.9 million people in the United States who live with epilepsy face a range of challenges that go beyond the need to manage their medical condition.1 These include depression related to their condition, disability, social disadvantages, and stigma, according to Martha Sajatovic, MD, of Case Western Reserve University School of Medicine in Cleveland, Ohio, and her colleagues, who published a paper exploring epilepsy self-management strategies.1
Then there is the burden that seems to compound all of those challenges, from the overall ability to manage their condition to accessing healthcare services: inadequate access to transportation. A 2016 study from the Centers for Disease Control and Prevention found that adults with epilepsy were more than 5 times more likely to report transportation as a barrier to accessing healthcare than adults without a history of epilepsy.2 Compared to the 2% of people without epilepsy who cited transportation as an obstacle, 9% of people with epilepsy cited it.
Among the 13 recommendations from the Institute of Medicine on improving the lives of people with epilepsy, one focused on improving community resources and quality of life and another on improving delivery and coordination of community services. Both noted the need to assist people with epilepsy in finding adequate transportation options.3
Even in individuals who can adequately access healthcare appointments, medications, and other treatments, the combination of driving restrictions and sparse or nonexistent public transportation options interferes with daily living and their overall quality of life.
“Freedom to drive is an ultimate determinant of social independence and quality of life in patients with epilepsy,” wrote Olga Taraschenko, MD, PhD, an assistant professor of neurology at the University of Nebraska Medical Center in Omaha, and her colleagues in a study that surveyed 25 adults with refractory epilepsy and 46 with pharmacologically controlled seizures about their driving, attitudes, and practices.4
Of the adults surveyed, 70% said driving restrictions were stigmatizing, and 79% reported that driving limitations reduced their quality of life. More than half said employment opportunities were the biggest casualty of driving restrictions, followed by recreation, access to education, and childcare. Indeed, three quarters of patients with controlled seizures were employed compared with less than half (48%) of patients in the refractory group.4
“People with epilepsy consistently describe this as one of their greatest concerns,” Allan Krumholz, MD, a professor of neurology at the University of Maryland Medical School in Baltimore, told Neurology Advisor.
“They don’t talk about side effects of medication, but they do talk about things like independence and driving,” he said. “They can’t live where they want to live, they can’t work at positions where they want to work, they can’t get their children to and from school. It can be tremendously disabling and depressing.”
Driving Restrictions Lack Adequate Evidence Base
The inability to drive can also be arbitrary, relying less on evidence and more on perceptions and beliefs. Driving restrictions related to epilepsy “aim to strike a balance between public safety vs the promotion of opportunities and optimal quality of life for people with epilepsy,” wrote Dr Krumholz and Anne T. Berg, PhD, in an editorial published in Neurology. But the lack of “consistent, reliable, scientific data regarding the magnitude and severity of these risks” has led to a patchwork of state laws that vary greatly and mostly rely only on expert opinion.5
“If a person’s seizures are controlled, then they should be able to drive; but what does control mean?” Dr Krumholz asked.
Dr Taraschenko told Neurology Advisor that state driving regulations are not evidence-based and provide only an arbitrary period for suspending driving privileges.
“In my opinion, the driving restrictions in epilepsy should be based on the severity of disease, seizure responsiveness to medications, patient compliance, and other clinical factors rather than being governed by the place of residence,” she said. “The results of our study revealed that patients continue to drive despite being aware of the laws, so the current laws are not very effective to prevent driving with seizures.”
They found that a third of the respondents (34%) continued driving even when legally restricted, and 6% had accidents related to seizures.4 These kinds of findings don’t surprise Dr Krumholz, who said many drivers never report their condition, even when it’s legally required.
“The stricter you make the rules, the less likely people are to report themselves,” he told Neurology Advisor. “More liberal rules actually may make it better for public safety because people will be more likely to identify themselves and be monitored.”
That monitoring may even reveal that seizures are not as big of a threat as they are believed to be.
A nationwide Swedish study compared traffic accidents that did and did not involve someone with epilepsy from 2006 to 2013.6 The study could not assess the accident severity, whether a seizure caused the crash, each person’s overall exposure to driving (ie, the denominator of exposures), or whether the person with epilepsy was a driver, passenger, or pedestrian.
Nevertheless, the study found a person with epilepsy was 1.3 times more likely to be involved in a car accident, compared to a 1.7 times greater risk for bicycle accidents and more than double the risk for pedestrian accidents.6
Dr Krumholz and Dr Berg noted that accidents involving a person with epilepsy resulted in death in 6 out of 1000 accidents, compared with 10 in 1000 when no one involved had epilepsy.5
Public transportation rarely fills in the void left by driving restrictions. In Dr Taraschenko’s study, 90% of the participants relied on family and friends for transportation. Only approximately 35% to 36% of the participants surveyed in the study could access public transportation.4
Solutions: Now and Looking Forward
Two ways states and communities could address inadequate transportation options today are to expand public transportation and rewrite driving regulations to reflect current evidence.
“About 60% to 70% of people who have epilepsy can have their seizures completely controlled with medications,” Dr Krumholz told Neurology Advisor. “It’s clear these people really don’t pose a risk for driving.”
But little published data exist to guide appropriate laws. After gathering that data, society must then determine what an acceptable level of risk is for drivers with epilepsy, Dr Krumholz said. Improving public transportation is potentially more difficult but no less important, he said. “It should really be built into society,” he said.
In the meantime, physicians should help patients understand and navigate their options, Dr Sajatovic told Neurology Advisor.
“It’s helpful for clinicians to know what their local environments are and to be able to suggest resources,” she said. “For instance, the Epilepsy Foundation and other advocacy organizations can be very helpful in giving people information on their local resources, including some of the regulations that are relevant.”
E-health offers other solutions, as noted in a report from Managing Epilepsy Well (MEW) Network, an initiative from the Centers for Disease Control and Prevention aimed at identifying and researching ways to implement the National Institute of Health (NIH) recommendations in local communities.
Among the evidence-based programs MEW Network helped develop to promote self-management in people with epilepsy are programs delivered by telephone or online, such as Epilepsy Awareness Support and Education (WebEase), Project UPLIFT (online or phone), and the Program for Active Consumer Engagement in Epilepsy Self-Management (PACES) (phone).1
Dr Krumholz also anticipates that the arrival of self-driving cars, be it 1 or 5 decades from now, will offer a solution.
“It won’t be cheap, but as a society we need to be prepared to support it for people with epilepsy and other disabilities as well,” he told Neurology Advisor. “Getting around is such an important part of our lives that it should be a right to navigate your society.”
Drs Krumholz, Sajatovic, and Taraschenko have no disclosures.
References
- Sajatovic M, Jobst BC, Shegog R, et al. The Managing Epilepsy Well Network: advancing epilepsy self-management. Am J Prev Med. 2017;52(3S3):S241-S245.
- Thurman DJ, Kobau R, Luo Y, Helmers SL, Zack MM. Health-care access among adults with epilepsy: The U.S. National Health Interview Survey, 2010 and 2013. Epilepsy Behav. 2016;55:184-188.
- England MJ, Liverman CT, Schultz AM, Strawbridge LM. A summary of the Institute of Medicine report: epilepsy across the spectrum: promoting health and understanding. Epilepsy Behav. 2012;25(2):266-276.
- Jayagopal LA, Samson KK, Taraschenko O. Driving with drug-resistant and controlled seizures from a patient’s perspective: Assessment of attitudes and practices. Epilepsy Behav. 2018;81:101-106.
- Krumholz A, Berg AT. Epilepsy and transportation: Moving through the confusion. Neurology. 2018;0:1-2.
- Sundelin HEK, Chang Z, Larsson H, et al. Epilepsy, antiepileptic drugs, and serious transport accidents: A nationwide cohort study. Neurology. 2018;90(13):e1111-e1118.
