Epilepsy and Traffic Medicine: Are current driving restrictions for people with epilepsy discriminatory?
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Jane Fagan UCD School of Medicine
Epilepsy and Traffic Medicine: Are current driving
restrictions for people with epilepsy discriminatory?
Introduction
Epilepsy is one of the most common neurological disorders with over 50 million people
affected worldwide.[1] In Ireland, 40,000 people have a diagnosis of epilepsy and of these, 30%
suffer from recurrent uncontrollable seizures.[2] Seizures may be due to patient or medication
factors and pose a significant risk to people with epilepsy [PWE] in every aspect of their lives,
especially driving. Driving remains the most popular mode of transport with 16.7 of 26.5 million
UK workers commuting via car. [3] However, PWE may be unable to drive for long periods due
to breakthrough seizures causing discrimination in occupations which require a driving license.
In this essay, I plan to examine the impact driving bans have on patients, the variability in
driving regulations in different jurisdictions and finally what the future of traffic medicine holds
for PWE.
Epilepsy and the impact of its diagnosis
Epilepsy is a chronic neurological condition characterised by recurrent unprovoked seizures.[4]
Seizures are defined as “transient occurrence of signs and/or symptoms due to abnormal
excessive or synchronous neuronal activity in the brain.” [5]
The cause for epilepsy is often
idiopathic and diagnosis is made thorough history, physical examination, and investigations
such as electroencephalograph (EEG). The 2017 International League Against Epilepsy
guidelines identified three classifications of epilepsy: Focal, Generalised and Unknown onset
depending on the area of the brain that is initially affected. [6] Focal onset seizures (previously
known as partial seizures) start in one area of the brain but may propagate, causing mild or
severe symptoms. During a focal seizure, PWE usually retain consciousness and experience
lip smacking, muscle flaccidity, repetitive jerking movements, sense of déjà vu, unusual smells
or taste, among other symptoms. Generalised onset seizures occur without preceding aura or
warning when both brain hemispheres are affected. Unknown onset is the term used when
the origin of the seizure cannot be ascertained.
In terms of treating epilepsy, antiepileptic drugs (AEDs) are the mainstay of treatment with
sodium valproate being the first line for most types of epilepsy. Monotherapy is thought to
control epilepsy in 50% of patients, polytherapy controls epilepsy in 20% of patients and 30%
1Jane Fagan UCD School of Medicine
of patients have refractory epilepsy.[7] Driving bans have the greatest impact upon the cohort
of patients with refractory epilepsy since they may experience recurrent seizures despite the
use of AEDs and are thus prohibited from driving for long periods. Although the treatment of
epilepsy has advanced, a persistent challenge continues to exist in managing patients with
refractory epilepsy as the epidemiological percentage has remained relatively stagnant. [8]
Uncontrollable seizures have profound emotional and physical effects on patients, negatively
[9]
impact patients quality of life. The unpredictable nature of seizures confers a considerable
risk to patients carrying out everyday tasks such as showering, cooking, or driving. This
unpredictability may lead to patients becoming isolated for fear of seizures and being deprived
of protective factors against developing mental illness such as exercise and social interaction.
Indeed, this impact may be an explanation for the higher anxiety, depression, and psychosis
rates seen in PWE. [10]
Besides the psychological impact of epilepsy, there are also financial considerations. A
diagnosis of epilepsy may affect a patient’s ability to work, either through their own limitations
or though stigmas and harmful myths that employers may hold concerning epilepsy. 50% of
[11]
patients encounter difficulty finding and sustaining employment. In addition, there is an
economic burden created by lifelong healthcare and medication associated costs. Allers et
al. performed a systematic review analysing the annual total cost of epilepsy per patient and
discovered multiple countries to have costs in excess of €1,000.[12] Though antiepileptic
medications are covered under the Long-Term Illness Scheme in Ireland, there is the cost of
regular GP and consultant visits. While it is free to see a consultant neurologist on the public
system, there are significant waiting times and delays leading PWE to access private care to
expedite their diagnosis or management. The National Treatment Purchase Fund found that
22,649 people are on a neurology waiting list in November 2020 with over 6,916 of these
waiting more than 18 months to see a neurologist.[13] During these waiting times, patients may
be on insufficient doses of medication and may continue driving when it is potentially unsafe.
To adequately manage the issue of road safety amongst PWE, we first need to identify,
consider, and tackle the potential factors which may negatively impact patients epilepsy and
affect their fitness to drive.
Epilepsy and Driving: What are the risks?
In medicine, doctors are constantly weighing up the risks and benefits of a situation before
formalising a decision. Driving a vehicle requires multiple skills which drivers must often
2Jane Fagan UCD School of Medicine
perform simultaneously such as attentiveness, coordination, expeditious reaction times and
decision making. Thus, strict regulations and requirements must be fulfilled prior to obtaining
a licence. These requirements includes the notification to the National Driving License Service
[NDLS] of medical conditions such as epilepsy which may affect a person’s ability to safely
drive a vehicle. Current literature shows three main risks associated with PWE and driving:
the risk of having a seizure while driving, the risk of antiepileptic drugs affecting fitness to drive
and the risk of patients lying about seizures and continuing to drive. I will discuss these risks,
correlate them with other medical conditions and then comment on how best to attenuate
them.
Firstly, it is important to quantify the risk of having a seizure when driving. Literature suggests
that PWE are more likely to be involved in road traffic accidents (RTAs) – relative risks of
between 1.47, 1.62 and 1.73 have been established when compared to people without
epilepsy [14, 15]
– yet very few of these accidents are fatal. Sheth et al. [16]
found that alcohol
was 156 times more likely and other medical conditions, like diabetes, were 26 times more
[17]
likely to be responsible for fatal crashes. Furthermore, Hansotia et al found that only 11%
of all RTAs involving PWE involved seizures with the majority being due to driver error. These
studies highlight the need for reconsideration of the harsh driving bans imposed upon PWE
considering the risk of RTAs in PWE is comparable to medical conditions, like cardiovascular
disease, which do not carry driving restrictions.[18]
Antiepileptic drugs are the primary treatment in epilepsy and without their creation, there would
most likely still be embargos on PWE obtaining a licence. Though revolutionary to patients in
many ways, AEDs don’t come without some liability. The most common side effects of AEDs
include lethargy, drowsiness, fatigue, dizziness, and headaches all of which may impair PWEs’
ability to drive safely and may interfere with PWEs day to day lives. [19] However, Sundelin et
al studied 29,000 patients to assess if AED use in PWE was associated with an increase in
serious RTAs and failed to find a correlation.[20] The real risk lies within the fact that worrisome
side effects may encourage non-adherence of medications among PWE, increasing the risk
of RTA to double in non-compliant patients.[21] Doctors have a role to play in curtailing this risk
by inviting patients to discuss side effects of medications. Therefore, thoughtful deliberation
between patients and doctors regarding changing medication or trialling discontinuation is
extremely necessary. However, clinicians may abstain from changing medications despite
persistent side effects for fear of triggering a seizure, thus further rendering PWE ineligible to
drive. This is a concern for patients as well, Sultan et al found that participants with epilepsy
3Jane Fagan UCD School of Medicine
“identified driving eligibility as a barrier to identifying the optimal drug regimen for their
epilepsy”. [22] PWE should not have to suffer intolerable side effects or inadequate therapeutic
doses for fear of seizing. In fact, clinicians could use the periods of driving cessation to
thoroughly examine current doses and medications as a prophylactic measure to decrease
the risk of future seizures and potentially accidents.
The final risk associated with driving and epilepsy is that of dishonestly. Driving regulations
which are overly prohibitive run the risk of PWE not complying with them for fear of losing their
independence. If restrictions are too stringent, there is a risk of PWE lying to doctors about
individual seizures or completely concealing their diagnosis. This paradoxically leads to an
increased risk for PWE as they are not receiving regular medical care and thus may be on
[23]
suboptimal doses of AEDs or not taking AEDs at all. Krumholz et al found that
approximately half of PWE who drive do not report their condition to regulatory authorities and
that less restrictive driving regulations such as a shorter seizure free interval (SFI) “may
actually reduce the cumulative crash risk posed by epilepsy on the whole”. Moreover, a study
in Norfolk found that a sixth of PWE concealed seizures from their GP due to the following
three factors: “current employment, possession of a driving licence, and the psychological
correlates of epilepsy”.[24] To counteract this risk, doctors need to know the correct driving
regulations and be proficient in factually counselling patients. In a study which assessed
doctors of all grades in Belfast on the driving regulations for PWE, only 18% were aware of
the correct regulations, which may be a direct consequence of the paucity of teaching hours
[25]
traffic medicine is afforded in medical school curriculum. Traffic medicine is a fundamental
area of medicine – as it encompasses multiple specialities and is integral to offering safe and
controlled care to all road users, therefore merits allocation.
Assessing fitness to drive for people with epilepsy.
Having discussed the risks epilepsy poses to driving, it is now pertinent to discuss how this
risk is assessed and how different jurisdictions quantify the risk. In Ireland, the NDLS require
that PWE report their diagnosis when applying for or renewing driving licenses. In addition,
the NDLS mandates that individuals with one seizure have a SFI of six-months and individuals
with multiple seizures required a twelve-month SFI before returning to drive.[26] A literature
search was conducted to assess if a one-year SFI was used in other jurisdictions and what
the evidence for its use was. The European Directive 2009/112/EC was enacted into law in
2009 and aimed to harmonise the differences in driving bans in European states. The
regulations advise a one-year SFI for PWE in the group one category and a ten-year SFI and
4Jane Fagan UCD School of Medicine
ten-year anti-epileptic medication free period to apply for a group two HGV licence.[27] Other
countries such as America have less cohesive guidelines which vary greatly depending on the
state laws. For example, there is no set SFI required in Idaho and Maryland has a system
based upon favourable/unfavourable modifiers for lengthening the SFI. The variability among
driving regulations as seen in figure one suggests that the evidence regarding fitness to drive
guidelines in PWE is limited and obscure. Therefore, there is a necessity for the establishment
of evidence-based guidelines for PWE. This was conveyed by 82% of epileptologists who
concurred that there is an exigency for more research on how to evaluate fitness to drive in
PWE. [28]
Country in question Mandatory reporting by Length of SFI required for
physician required PWE
America [29] Varies by state Differs from 3-12 months
[30]
Australia Varies by state Differs from 1-24 months
(Yes, in Southern Australia)
Ireland + Europe [27] No 1 year
India [31] N/A Complete ban on PWE driving
Japan [32] No 2 years
Figure 1 – The various SFIs required before PWE can return to drive in various countries
A further consideration regarding driving regulations for PWE is that of mandatory reporting,
either by doctors or PWE. There is no mandatory reporting required by doctors in Ireland and
thus the onus is on patients to report any seizures or changes in their condition to the NDLS.
When a patient has a seizure, they must report it to their GP who will advise the patient to
inform the NDLS and cease driving until they have a SFI of six/twelve months. Certain
clinicians feel that the lack of mandatory reporting from doctors poses a risk to other road
users [33] but there is no evidence to prove this opinion is correct. In fact, research has shown
that there may be less reporting of seizures in jurisdictions where mandatory reporting is
[34]
enforced. Personally, I think that it should be the patients responsibility to report seizures
as this is a more autonomous process which enables more honest and forthcoming
discussions between health care professionals and patients. However, it is of the upmost
importance that clinicians are comfortable with assessing fitness to drive and informing
patients of relevant driving restrictions. Unfortunately, it would appear that this is not
happening. A paper found that only 21% of patients with first presentation of seizures received
factual advice regarding driving restrictions.[35] In conducting research for this essay, I
struggled to find clear and coherent information on what the regulations were regarding
5Jane Fagan UCD School of Medicine
reporting seizures to the NDLS. Even an acquaintance who had recently had a seizure was
unaware of his duty to report his seizure.
The future of driving and epilepsy
Having considered the current driving regulations for PWE, I would like to suggest certain
changes which may ameliorate some of the difficulties PWE face in their everyday lives
regarding driving cessation. Driving a vehicle is integral to our day to day lives and was listed
as the number one concern in a US survey amongst PWE [36] and yet PWE are limited by their
diagnosis when driving. Current driving regulations are based upon the SFI which has been
shown to be a reliable predictor of future seizures. However, other factors warrant
consideration when assessing fitness to drive in PWE. A preferable system would be one
which evaluated a patients individual risk by examining factors such as compliance to
medications, the presence of auras with seizures, previous RTAs, and abnormal EEG results.
These factors have been studied and shown to increase or decrease the risk of car accidents
[37, 38, 39]
and would allow for a more rounded assessment of fitness to drive. As well as this,
more research is needed to correct the inconsistencies in the suggested time of SFI.
Drazkowski et al found that a reduction in the SFI from 12 to 3 months did not result in a
[40]
significant increase in seizure related crashes in Arizona and data from Sheth et al. has
shown “there is that there is no difference in accident rates between US states requiring a long
(6–12 months) or short (3 months) SFP”. [7] Moreover, if long driving bans are continued to be
employed, there needs to be alternative modes of transport offered to PWE. One example of
this is having free or discounted public transport for PWE when they are banned from driving.
In fact, this was the case from 2018-2020, but the incentive has recently been discontinued
with little backlash.[41] This simple measure would ensure that PWE are better able to comply
with medical advice regarding driving cessation and would support PWE to attend hospital
medical appointments.
Dr Krumholz in a Neurology editorial stated that driving restrictions for PWE should “aim to
strike a balance between public safety vs the promotion of opportunities and optimal quality of
life for people with epilepsy,” [42]
Currently more is needed to be done. Ban et al. proposed a
system whereby maximum driving times are set for PWE depending on their SFI. It stands to
reason that the less time a PWE spends at the wheel, the lower the risk of them having an
RTA is.[43] This would facilitate the safe return of driving to PWE but in a more controlled
fashion. Another improvement which is needed for PWE is that of equitable access to
6Jane Fagan UCD School of Medicine
insurance extortionate rates or are not being considered by insurers at all. This may tempt
PWE to lie about their epilepsy but they can jeopardise claims by falsifying medical information
[44]
or face legal prosecution. With the prospect of self-driving cars and the potential of new
[45],
molecular patterns which could be used to predict seizure risk the future of traffic medicine
holds potential to greatly improve the quality of life of PWE. However, the most paramount
advancement required is to find a cure for this debilitating disease. Epilepsy has existed since
2000 BC[46] and yet there are still uncertainties regarding the pathogenesis and PWE continue
to be unfairly discriminated against in all aspects of life.
Conclusion
I chose this topic after an acquittance recently had a seizure after missing one dose of his
medication and as a consequence was banned from driving for one year. This one slipup has
had a considerable effect on his employment prospects when he leaves university this
summer. He will not be able to seek employment where driving is a pre-requisite, which
according to the RAC is a requirement for almost one in five job adverts.[47] Having researched
various driving regulations in Ireland and across the world, I believe that the current restrictions
for PWE in Ireland are too inflexible and do not leave scope for the nuances of the simple
mistake of omitting a medication dose. It is too simplistic and unfair on PWE to dictate their
lives on the basis of restrictions “largely based on expert opinion, practical experience, and
political necessity rather than on strong scientific evidence”.[48] Doctors need to advocate for
their patients and assess the impact driving bans have on individual patients. Let’s not allow
patients with epilepsy to be limited any further by their diagnosis. I conclude that it is possible
to have evidence-based driving regulations for PWE which mitigate the risk of harm to others
without depriving PWE of their motoring independence. Ireland is a global leader in traffic
medicine with recent analysis ranking Ireland as the fourth safest country in the world for road
safety.[49] Whilst accepting that road safety is the priority for traffic medicine, I believe that
there is scope for discussions regarding the discriminatory driving restrictions specifically
applied to PWE.
Word count: 2984 words
7Jane Fagan UCD School of Medicine
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