Acta Neurol Scand 2012: 126 (Suppl. 194): 1–9 DOI: 10.1111/ane.

12014 Ó 2012 John Wiley & Sons A/S

ACTA NEUROLOGICA
SCANDINAVICA

Review Article
The impact of epilepsy on patients’ lives
Kerr MP. The impact of epilepsy on patients’ lives. M. P. Kerr
Acta Neurol Scand: 2012: 126 (Suppl 194): 1–9. Welsh Centre for Learning Disabilities, Cardiff
© 2012 John Wiley & Sons A/S. University, Cardiff, Wales, UK

The impact of epilepsy is multifaceted and extensive on its effects. The

occurrence of seizures is unpredictable and often dangerous,
increasing the risk of injury, hospitalization and mortality, and
adversely affecting a patient’s mental health, often resulting in
anxiety, depression or cognitive impairment. Seizures can also result
in stigmatization and social exclusion, with detrimental effects on an
individual’s confidence and self-esteem. However, the burden of
epilepsy extends beyond the effects of seizures themselves. In
particular, individuals with epilepsy are significantly more likely to
have medical or psychiatric comorbidities than those without epilepsy,
and comorbidity in patients with epilepsy has been shown to be
strongly correlated with negative impacts on subjective health status
and quality of life (QoL). In addition, antiepileptic drug (AED)
treatment is commonly associated with side effects, which further
impair patients’ QoL. Patient surveys provide valuable insights into
what matters to patients in their daily lives and highlight important
discrepancies between the perceptions of patients and their physicians.
Key words: antiepileptic drug; comorbidity; epilepsy;
For example, survey data show that physicians underestimate the functional status; patient survey; quality of life; side
number of patients experiencing AED side effects and the impact of effects
these on patients. Screening questionnaires can help physicians to
M. P. Kerr, Welsh Centre for Learning Disabilities,
quickly identify problems with treatment side effects; also, to Cardiff University, Neuadd Meirionnydd, Heath Park,
recognize comorbidities such as depression that are otherwise difficult Cardiff CF14 4YS, Wales, UK
to identify in a time-limited consultation. Ultimately, successful Tel.: +44 29 20687204
management of epilepsy requires a holistic approach to care, with Fax: +44 29 20687200
treatment tailored to the individual patient’s needs; this can only be e-mail: kerrmp@cf.ac.uk
achieved through effective doctor–patient communication and the full
involvement of a multidisciplinary care team. Accepted for publication September 13, 2012

employment prospects and social participation (2).

Introduction
The impacts of epilepsy are far-reaching, not only
for the individual living with the condition, but
also for their family and the wider society. For the
person with epilepsy, the disease burden is not con-
fined simply to the physical risks of seizures and
the risks of treatment; it has a much broader
impact through the stigma that is still attached to
having the condition (Fig. 1). This stigma fre-
quently results in social exclusion and isolation, as
well as difficulties in accessing educational services
and obtaining employment (1). Coupled with the
neurological impairment underlying the condition,
epilepsy is highly comorbid with other cognitive,
physical and psychiatric disorders, which often fur-
ther limit patients’ functional ability, educational/
It is therefore important that treatment of epilepsy,
while understandably focusing on the efficacy of
antiepileptic drugs (AEDs) or neurosurgery, looks
beyond this to address the individual patient’s
needs holistically, in terms of comorbidity, side
effects and overall quality of life (QoL).
Impact of seizures
Injuries and hospitalization
People with epilepsy are at increased risk of
injury from seizures – although there have been
conflicting reports regarding the degree of risk
compared with the general population, due to dif-
ferences in study design and populations, and

1
Kerr
Figure 1. The impact of epilepsy on patients’ lives.
accuracy of injury reporting (3–8). In the largest
study assessing the risk of accidents associated
with epilepsy, the cumulative probability of
accidents at 12 months was 17% in patients with
epilepsy vs 12% in matched controls, the corre-
sponding values at 24 months being 27% vs 17%
(P < 0.0001) (3). In addition to the potentially
injurious effects of seizures themselves (8), injury
in patients with epilepsy may result from comor-
bid conditions (9, 10), or adverse cognitive effects
of AED treatment (11). The most frequent inju-
ries among individuals with epilepsy are contu-
sions, wounds, fractures, abrasions, brain
concussions, sprains/strains and burns (12, 13).
For example, patients with epilepsy have a 2–6
times greater risk of bone fracture than the gen-
eral population, not only due to an increased risk
of seizure-related injury, but also because some
AEDs are associated with decreased bone mineral
density (14–16). People with epilepsy are more
likely than the general population to die as a
result of an accident, and have a 5% chance per
year of visiting an emergency department due to
an injury resulting from a seizure (17). One large
population-based study reported that, among
individuals receiving care within 48 h, hospital
admissions following injuries were three times
more frequent in people with epilepsy than in the
general population (24.2% vs 8.1%; relative risk
3.0; 95% confidence intervals 1.3, 4.7) (6). Other
studies have reported similarly high rates of hos-
pitalization and increased use of hospital services
for patients with epilepsy (4, 18, 19).
Mortality
Individuals with epilepsy have a mortality rate
that is 2–3 times higher than the general popula-
2
tion (20–23). Standardized mortality ratios
(SMRs) are highest in the young (due primarily
to the low expected mortality in children) and
during the first 5–10 years after diagnosis (24).
Higher mortality in patients with epilepsy appears
to be partly related to the underlying aetiology;
mortality due to, for example, cerebrovascular
diseases and neoplasms being increased in those
with epilepsy (24). Seizure-related deaths are rare,
but possible, in new-onset epilepsy and may
account for up to 40% of all deaths in patients
with chronic epilepsy (24). Sudden unexpected
death in epilepsy (SUDEP) is the most common
cause of death directly related to epilepsy (25–
27). Indeed, for young adults with epilepsy, the
SMR for SUDEP is >20 compared with the gen-
eral population (24). Key risk factors for SUDEP
include intractable epilepsy, high seizure
frequency (particularly generalized tonic–clonic
seizures), use of polytherapy, onset of epilepsy at
an early age and long epilepsy duration (25–27).
Although the mechanisms underlying the patho-
genesis of SUDEP are unclear, lack of seizure
control appears to be a particularly important
contributing factor, the risk of SUDEP being
almost 40 times higher in patients who continue
to have seizures compared with those who are
seizure free (28).
Impact of seizures on mental health
Seizures also impact on the mental health of
patients. The association between epilepsy and
depression is particularly well established and
appears to be bidirectional (29, 30). A longitudi-
nal, community-based, observational study investi-
gated the interrelationship between psychological
factors (stress, anxiety and depression) and sei-

zures in a cohort of over 400 patients with
epilepsy, using random effects latent variable
modelling to analyse data from a range of well-
known and validated measures of physical, social
and psychological health, collected at two time
points (31). Although stress, anxiety and depres-
sion were each found to be significant predictors
of change in seizure recency (i.e. time since last
seizure; P < 0.01 for all), depression was found
to mediate the relationship of both anxiety and
stress with modelled change in seizure recency
(P < 0.01) and seizure frequency (P < 0.01) over
time (31). Thus, although individuals with
epilepsy consider stress to be the most likely trig-
ger for a seizure (32), the influence of perceived
stress and anxiety appears to be mediated by
symptoms of depression, highlighting the impor-
tance of depression management alongside seizure
management in the treatment of epilepsy (31).
The risk of depression and other psychiatric
disorders appears to be particularly high in epi-
lepsy patients with intellectual disability. A pro-
spective study comparing the incidence of
psychiatric symptoms over a 1-year period in 45
adult epilepsy patients with intellectual disability,
compared with 45 adults without epilepsy who
were matched on the level of intellectual disabil-
ity, found those with epilepsy to have a more
than seven times increased risk of developing psy-
chiatric disorders, particularly depression
(P = 0.017) and unspecified disorders of pre-
sumed organic origin, including dementia
(P = 0.001), than the matched controls (33).
Other studies, such as SANAD, have demon-
strated that newly diagnosed patients with epi-
lepsy are cognitively compromised before starting
AED treatment, the domains most affected being
memory and psychomotor speed (34). Such find-
ings indicate that seizures may themselves result
in cognitive impairment (35). Cognitive impair-
ment, in turn, increases the likelihood of physical
injury in patients with epilepsy (36).
Given the negative and multidimensional effects
seizures can have on patients’ lives, it is unsurpris-
ing that both frequency and severity of seizures
have been shown to be independently associated
with reduced QoL in patients with epilepsy (37,
38). Added to the actual occurrence of seizures,
anxiety about seizures (‘seizure worry’) has also
been shown to be one of the most important fac-
tors affecting QoL in patients with epilepsy (39).
Wider impact of epilepsy
It is clear that people with epilepsy have to cope
with far more than the occurrence of seizures per
Impact of epilepsy on patients’ lives
se. All areas of life may be affected by having
epilepsy; but several outcomes, especially educa-
tional and social, appear to be influenced by fac-
tors beyond the occurrence of actual seizures.
These factors include the stigma associated with
having epilepsy and the association of epilepsy
with mental ill-health.
Stigma
Suffering from epilepsy – and, to a lesser extent,
receiving treatment for epilepsy – has a clear
impact on self-esteem and social stigma. Even
today, many people with epilepsy find themselves
stigmatized and marginalized (40). Due to the
negative attitudes of others, individuals with epi-
lepsy can be excluded socially, banned from
school, denied employment and, in some coun-
tries, prevented from marrying (41). Reducing the
stigma of epilepsy is therefore of key importance
in improving the QoL of people with the
condition (42). The stigma experienced by an
individual with epilepsy may be ‘felt’ and/or
‘enacted’ – felt stigma referring to the shame
associated with having epilepsy and the oppres-
sive fear of encountering enacted stigma; enacted
stigma referring to actual discrimination against
people with epilepsy solely on the basis of their
condition (43). Although the published literature
provides evidence for both felt and enacted
stigma among patients with epilepsy, it has been
suggested that the relative weight of the two
elements may vary according to sociocultural
contexts and the degree to which seizures are
successfully controlled – felt stigma perhaps being
of greater concern to people with epilepsy in the
developed world, enacted stigma of greater con-
cern in developing countries (44, 45). Interven-
tions aimed at specifically reducing the stigma of
epilepsy therefore need to take local conditions
into account and be multifaceted in approach
(43). Although scant, evidence is accumulating
that tailored interventions can not only effectively
reduce stigma in individuals with epilepsy, result-
ing in positive effects on broader QoL, but also
improve public attitudes towards the condition
(43).
Association with mental ill-health
Beyond the direct impact of seizures on cognitive
function and mental health, as outlined previ-
ously, significant correlations have been reported
between epilepsy and depression, anxiety, anger,
suicidal thoughts, attempted suicide and com-
pleted suicide (46–52). In a study of over 100
3
Kerr
patients with temporal lobe epilepsy, approxi-
mately one-quarter of participants were found to
have high levels of hopelessness, which, according
to criteria developed by Beck et al. (53), is associ-
ated with an increased risk of engaging in fatal
suicidal behaviour (54). In this study, a high level
of hopelessness was associated with high levels of
depression and anxiety, the increased level of
anxiety suggesting an energizing factor that may
increase the likelihood of suicidal acting-out
behaviour (54). Another population-based, case–
control study indicated that the risk of suicide in
individuals with epilepsy may be increased even if
coexisting psychiatric disease, demographic differ-
ences and socioeconomic factors are taken into
account (50).
Given the interrelatedness of epilepsy with
depression, anxiety, hopelessness and suicidal
behaviour, it would seem appropriate to routinely
evaluate the mental health of patients with
epilepsy. Careful research is required to determine
the best methods for doing so, however, as the
ways in which symptoms of mental ill-health
present themselves in patients with epilepsy may
differ from the wider population. For example,
depression in epilepsy commonly has an atypical
presentation that can resemble dysthymic disor-
der and fail to meet diagnostic criteria for depres-
sion (55, 56). Instruments designed specifically for
use in patients with epilepsy, such as the Neuro-
logical Disorders Depression Inventory in
Epilepsy (NDDI-E) (57), may help address this
issue and provide clinicians with a pragmatic
means of identifying depression during patient
interviews in the consulting room.
Impact of comorbidities
Many studies have demonstrated that patients
with epilepsy are at a higher risk of a wide range
of medical and psychiatric comorbidities, com-
pared with the general population (2, 47, 49, 58–
63). These comorbidities include medical condi-
tions, such as stroke, asthma, hearing impair-
ment, visual impairment, digestive disorders,
headache and asthma; and psychiatric disorders,
such as depression, anxiety, panic disorder and
behavioural disorders (2, 47).
Recent results from the US National Comor-
bidity Survey Replication (NCS-R), comprising
data from over 5500 individuals, demonstrated
that patients with epilepsy are significantly more
likely to have at least one physical comorbidity
(93.6% vs 77.8%; P < 0.001; odds ratio 4.2) and
at least one mental disorder (67.9% vs 47.0%;
P = 0.011; odds ratio 2.1) than people without
4
epilepsy, after controlling for sociodemographic
variables such as age, sex and race (2). Epilepsy
is particularly strongly correlated with having
high physical comorbidity (defined as four or
more comorbid physical disorders), with 41.2%
of patients with epilepsy experiencing this level of
comorbidity compared with 20.2% of people
without epilepsy (P < 0.001; odds ratio 6.2) (2).
Comorbidities may occur before, simultaneously
with, or after epilepsy has been diagnosed, while
some associations may be bidirectional (58). For
example, the risk of unprovoked seizures in
children is increased when migraine with aura is
present (64), while the risk of new-onset migraine
is increased in subjects with epilepsy (58, 65).
Unsurprisingly, comorbidity has an impact on
the overall health status and QoL of patients. In
a systematic review assessing the impact of
somatic and psychiatric comorbidities on QoL in
physically ill patients, 39 of 45 studies demon-
strated a significant association between comor-
bidity and reduced QoL (66). For epilepsy
specifically, comorbidity has been shown to be
strongly correlated with both subjective health
status and QoL (39, 46, 67–70). For example, the
Epilepsy Impact Project Group conducted a sur-
vey to assess the impact of clinical depression on
the QoL of over 500 patients with epilepsy and
found that Quality of Life in Epilepsy-89 ques-
tionnaire (QOLIE-89) scores were significantly
reduced by comorbid depression (P < 0.0001),
regardless of seizure type (46). Hierarchical
regression analysis demonstrated that epilepsy
patients with major depression had significantly
poorer QoL than those with no depression
(P < 0.0001), after controlling for seizure type
and seizure recency (46).
In addition to the impact on patients them-
selves, the high level of comorbidity associated
with epilepsy has a substantial impact on the
healthcare system (58, 62). The Treatment in
Geriatric Epilepsy Research (TIGER) study, a
nationwide US observational study of over
800,000 patients with epilepsy aged >66 years,
found that the rate of hospitalization for elderly
new-onset patients with epilepsy was 52%, com-
pared with 15% for elderly patients without
epilepsy (19). These hospitalizations were not
only for recurrent seizures, but also for an exten-
sive range of medical and psychiatric conditions
(19).
Impact of epilepsy on functional status
Given the interconnectedness of epilepsy and its
associated comorbidities, it can be difficult to

untangle how much of the overall disease burden
is attributable to epilepsy itself vs comorbid con-
ditions. However, the recent NCS-R study was
able to address this question by using bivariate
and multivariate regression analysis, controlled
sequentially for sociodemographic characteristics
and comorbidities (2). This showed that the pro-
portion of survey respondents in the workforce
who reported their employment status to be ‘dis-
abled’ was almost five times higher among those
with epilepsy than those without (33.1% vs 7.0%;
P < 0.001; odds ratio 6.6), this difference remain-
ing significant after controlling for sociodemo-
graphic characteristics (age, sex and race),
physical comorbidities, mental comorbidities and
all comorbidities (2). Similar findings were
observed when these controls were applied to
World Health Organization Disability Assessment
Scale (WHO-DAS) measures of days out of role
and total days of role impairment. Extrapolating
these findings to US Census data, the authors
estimate that there were 89.4 million total days of
role impairment associated with epilepsy in the
USA at the time of NCS-R data collection, after
controlling for comorbid disorders (2). Interac-
tions between epilepsy and the number of comor-
bid conditions in predicting days of role
impairment were consistently insignificant (2).
These results therefore suggest that epilepsy itself
has a significant impact on functional status,
independent of comorbidity, but that this impact
is substantially compounded by the presence of
physical and mental comorbidities.
Impact of treatment
As with seizures, treatments for epilepsy have the
potential to negatively affect the lives of individu-
als with epilepsy – both directly, through the
impact of side effects, and indirectly, as a result
of the stigma associated with having to receive
treatment for epilepsy. Data from cross-sectional
studies and randomized controlled trials indicate
that up to 90% of patients with epilepsy experi-
ence AED side effects (71). Side effects can limit
progressive uptitration of AEDs to a level where
effective seizure control might be attained, side
effects alone having been shown to account for
up to 40% of treatment failures (71, 72). Indeed,
side effects are often more disabling for patients
than seizures themselves (73) and consequently
have a major impact on the QoL and overall
health status of patients.
A multicentre study exploring determinants of
health-related QoL in over 900 patients with
pharmacoresistant epilepsy found that AED side
Impact of epilepsy on patients’ lives
effects and depressive symptoms were by far the
strongest negative predictors of health-related
QoL (P < 0.001 for both) (74). The investigators
concluded that, if seizure freedom cannot be
achieved, patients are likely to benefit more from
strategies aimed at reducing the burden of AED
toxicity and depressive comorbidity than from
those aimed at reducing the frequency of seizures
(74). Other studies have reported similar findings
(57, 75, 76), some demonstrating that the QoL of
patients with epilepsy is impaired by AED side
effects even when patients achieve seizure remis-
sion (77, 78). In addition to their side effects,
AEDs can have a negative influence on the lives
of patients with epilepsy by contributing to the
stigma they feel or experience. This was illus-
trated by a psychosocial study conducted in
patients who were seizure-free for  2 years,
which found that 19% of those taking at least
two AEDs and 12% of those taking one AED
scored positively on a scale specifically designed
to assess stigma (79).
In the development of new AED treatments,
there has been increasing acknowledgement of
the importance of assessing the impact of treat-
ment on patients’ QoL and a drive to develop
appropriate measures for use in clinical trials and
longitudinal studies (80–82), resulting in a range
of robust, well-validated instruments (83, 84). For
example, the Adverse Events Profile (AEP) is a
brief, 19-item, self-report instrument that not
only enables AED side effects to be assessed in
clinical studies, but may also provide a screening
tool to help identify toxicity issues and guide the
tailoring of medication to reduce side effects in
clinical practice (85, 86). Given the strong link
between epilepsy and depression, there has also
been an increasing focus on assessing the effects
of AED treatment on patients’ depressive symp-
toms, using instruments such as the Montgomery
–Åsberg Depression Rating Scale (MADRS) (87).
The incorporation of such patient-reported
outcomes into AED clinical development
programmes is helping to bridge the gap between
clinical trials and clinical practice, providing
clinicians with valuable information on the likely
benefits and risks of treatment, beyond efficacy
and safety per se, when used in everyday practice.
What really matters to patients with epilepsy in their
daily lives?
Information from patient- and carer-derived
sources on the priorities for epilepsy care for
those who have the condition helps to balance
our scientific understanding of the impact of
5
Kerr
epilepsy and can provide useful signposting for
clinical and research interventions. Patient
surveys provide valuable insights into what
matters most to patients, helping to guide treat-
ment decisions and potentially shape future man-
agement practice. In fact, such surveys often
identify issues that complement the findings of
scientific studies. A good example of this is a
European study of over 5000 people with epilepsy
that highlighted the impact of side effects on
patients’ lives (40). The study found that nearly
90% of subjects reported experiencing at least
one AED side effect – most commonly, tiredness
(58%), memory problems (50%), difficulty con-
centrating (48%), sleepiness (45%), difficulty
thinking clearly (40%) and nervousness/agitation
(36%) (40). Overall, 44% of subjects reported
worrying ‘a lot’ or ‘some’ about side effects of
their AED treatment, and 31% had changed their
AED medication at least once in the previous
year due to side effects (6% changing AED medi-
cation at least three times in the previous year for
this reason) (40).
Another European survey (conducted in seven
countries) of 461 patients with epilepsy, 212
primary care physicians and 212 neurologists
highlighted some important discrepancies between
the perceptions of patients and their physicians
(88). Over three-quarters of patients (78%) cur-
rently treated with AEDs reported experiencing
side effects, with 45% experiencing at least three
different side effects. Most patients reported that
side effects have a negative impact on overall
QoL, interpersonal relationships and the ability
to work, but were reluctant to discuss these issues
with their physicians. Physicians in turn underes-
timated the number of patients experiencing side
effects, as well as the impact that side effects have
on patients. Importantly, patients and physicians
disagreed on several important factors that have
a bearing on treatment decisions, particularly
those relating to side effects. The majority of
patients (77%) and physicians (86%) believe that
public awareness about epilepsy is inadequate.
This survey therefore identifies some key chal-
lenges in the management of epilepsy; in particu-
lar, the importance of effective patient–physician
communication in the setting of treatment goals,
the need for greater consideration of tolerability
and safety concerns, and the need for greater
public awareness about epilepsy to reduce the
stigma attached to the condition (88).
A further study conducted by Thomas et al.
(89) collected information on epilepsy treatment
uncertainties from five focus groups, which
highlighted similarities and discrepancies in the
6
attitudes and priorities of epilepsy/carers (n = 25)
and clinicians (n = 16). The main areas of uncer-
tainty that patients and carers prioritized were
the cognitive side effects of drugs, management
of AED side effects, improvement in public
awareness about the treatment of epilepsy and
non-medical treatment of cognitive problems.
Patients rated information-based management
(e.g. improvement in public awareness) a consis-
tently higher priority than did clinicians
(P = 0.001). Epilepsy clinicians ranked uncertain-
ties regarding the treatment of non-epileptic
attack disorder, AED side effects, AED exposure
during pregnancy, treatment of depression and
AED mood side effects as the most important
priorities. Prescribing uncertainties (including for
older patients, children and pregnant women)
were more important to clinicians than to
patients (P < 0.0001), whereas AED side effects
were important to patients and carers than clini-
cians (P < 0.0001). There was, however, a high
level of agreement between patients/carers and
clinicians, the most important shared priority
being the cognitive side effects of AEDs. Overall,
five of the top 12 shared priorities concerned
AED side effects (89).
Other surveys have provided valuable informa-
tion about specific subgroups of patients with
epilepsy, such as children/teenagers (90) and men
(91). In addition, a pan-European patient survey
involving over 500 individuals was recently con-
ducted in order to explore the issues that really
matter to patients with epilepsy (92). The web-
based survey was developed in collaboration with
the International Bureau for Epilepsy and con-
sisted of a predominantly multiple-choice ques-
tionnaire that focuses on patients’ personal
experiences of how epilepsy impacts their lives,
how they manage their condition, and what actu-
ally matters most to them. The findings from the
survey will provide additional insights into the
needs and challenges of patients with epilepsy
and may help to further shape and improve
patient care in the future (92).
Conclusions
Epilepsy has a major impact on patients’ QoL
and functional status. The occurrence of seizures
is unpredictable and often dangerous, and can
make patients anxious or depressed and feel
stigmatized, socially excluded and lacking in self-
esteem. In addition to seizures, patients
frequently have to cope with a range of medical
and psychiatric comorbidities, as well as the side
effects of treatment, which further impair their

QoL. A holistic, individualized approach to
patient care is required in order to optimize
patients’ seizure outcomes and QoL, and this
relies on effective communication between doctor
and patient. Unfortunately, most doctors have
limited time to communicate with patients; but
there are tools available that can help clinicians
to recognize comorbidities that are otherwise dif-
ficult to identify in a limited time frame, such as
depression, and to quickly identify problems with
treatment side effects. Full involvement of the
wider care team is integral to providing holistic,
patient-centred care. Ultimately, effective man-
agement of epilepsy requires looking at the indi-
vidual needs of each person and ensuring that
they are given the appropriate treatment, as well
as the necessary information and support to help
improve their daily lives.
Acknowledgements
Editorial support was provided by mXm Medical Communi-
cations and funded by Eisai Ltd.
Conflict of interest and sources of funding
MK has received speaker fees/honoraria from Eisai, GSK
and UCB, all of whom produce drugs for the management of
epilepsy.
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