Seizure: European Journal of Epilepsy 90 (2021) 93–98

Contents lists available at ScienceDirect

Seizure: European Journal of Epilepsy

journal homepage: www.elsevier.com/locate/seizure

Severity and disability related to epilepsy from the perspective of patients

and physicians: A cross-cultural adaptation of the GASE and GAD scales
Edson Pillotto Duarte a, b, Catarina Dantas Corrêa c, Bruna Souza Marques c,
Guilherme Simone Mendonça d, Vera Lúcia Braatz e, Rodrigo Harger e, Diego Antônio Fagundes f,
Roger Walz a, g, Samuel Wiebe h, Mariana dos Santos Lunardi f, g, Katia Lin a, g, *
a
Programa de Pós-Graduação em Ciências Médicas, Universidade Federal de Santa Catarina, Florianópolis, SC, Brazil
b
Hospital Regional de São José, São José, SC, Brazil
c
Curso de Graduação em Medicina, Universidade Federal de Santa Catarina, Florianópolis, SC, Brazil
d
Hospital Santa Isabel, Blumenau, SC, Brazil
e
Hospital Municipal São José, Joinville, SC, Brazil
f
Hospital Governador Celso Ramos, Florianópolis, SC, Brazil
g
Serviço de Neurologia, Hospital Universitário Polydoro Ernani de São Thiago, Universidade Federal de Santa Catarina, Florianópolis, SC, Brazil
h
Department of Clinical Neurosciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada

A R T I C L E I N F O A B S T R A C T

Keywords: Purpose: To perform a cross-cultural adaptation of the Global Assessment of Severity of Epilepsy (GASE) and Global
Epilepsy severity Assessment of Disability (GAD) scales to Brazilian Portuguese and compare patients’ self-rated scores with their
Disability attending physicians’ ratings.
Seizure
Methods: We conducted an observational, multicentre, cross-sectional study. Patients followed up in five epilepsy
Global rating scale
Questionnaire
centres in Brazil responded to GASE and GAD questionnaires and to the Hospital Anxiety and Depression Scale and
Patient-reported outcomes the Adverse Events Profile, both previously validated in Brazil. GASE and GAD scales were also completed by 20
attending physicians providing care to these patients.
Results: A total of 138 patients were interviewed, with a mean age of 39.9 ± 13.81 years and a median of 11
(interquartile range, IQR = 7.5–12) years of education. Eighty-five (61.6%) patients were female. Most patients
were diagnosed with focal epilepsy (82.6%). Only 5.8% and 3.6% of respondents reported having difficulty
understanding the GASE and GAD, respectively. The patients scored a median of 3 (IQR = 2–5) on the self-
perceived GASE and 4 (IQR = 2–6) on the GAD. Physician ratings were moderately to highly correlated with
patients’ self-perceived scores on the GASE and GAD. Linear regression analysis demonstrated that physicians’
GASE and GAD scores predicted 37% and 20% of the patients’ self-reported GASE and GAD variation,
respectively.
Conclusion: Brazilian Portuguese cross-cultural adaptation of the GASE and GAD was successful. These scales
were found to be easy to use by patients and health professionals, and revealed the burden of epilepsy on pa­
tients’ lives.

1. Introduction least 30–40% of people with pharmacoresistant epilepsy have increased

morbidity and mortality with poor long-term prognosis [1,2]. Addi­
Epilepsy is one of the most common and serious neurological dis­ tionally, epilepsy impairs the quality of life (QoL) of patients due to
eases, and while many people with epilepsy (PWE) have normal lives, at diverse factors such as uncontrolled and unpredictable seizures,

Abbreviations: AEP, adverse events profile; ASM, antiseizure medication; GAD, global assessment of disability; GASE, global assessment of severity of epilepsy;
HADS-A, hospital anxiety and depression scale - anxiety; HADS-D, hospital anxiety and depression scale - depression; IBGE, Brazilian institute of geography and
statistics; IQR, interquartile range; PWE, people with epilepsy; QoL, quality of life.
* Corresponding author at: Departamento de Clínica Médica, Hospital Universitário Polydoro Ernani de São Thiago; Rua Prof. Maria Flora Pausewang S/ No - 3o
andar; Caixa Postal: 5199, Campus Universitário; 88040-900 Florianópolis SC, Brazil.
E-mail addresses: katia.lin@ufsc.br, linkatia@uol.com.br (K. Lin).

https://doi.org/10.1016/j.seizure.2021.03.006
Received 15 December 2020; Received in revised form 6 March 2021; Accepted 8 March 2021
Available online 10 March 2021
1059-1311/© 2021 British Epilepsy Association. Published by Elsevier Ltd. This article is made available under the Elsevier license (http://www.elsevier.com/open-
access/userlicense/1.0/).
E.P. Duarte et al.
psychosocial issues, stigma, and prolonged use of antiseizure medication
(ASM) [1–3]. Seizure severity affects a patient’s autonomy, limiting
their social life and employability, and causing injuries and hospital­
isation [4]. However, the impact of epilepsy on a person’s life may be
difficult to quantify objectively and in a standardised manner.
In general, reducing seizure frequency is a key feature in epilepsy
care. Nonetheless, it is crucial to understand patients’ perceptions of
seizure severity and disability as well as their associated factors, which
may be different from their physician’s perspective. Therefore, several
tests have been developed to investigate patients’ perceptions of severity
and disability related to epilepsy and their QoL. These include The
Personal Impact of Epilepsy Scale [5], the Liverpool Impact of Epilepsy Scale
[6], the Chalfont Seizure Severity Scale [7], and the 31-Item Quality of Life
in Epilepsy Inventory [8]. More recently, the Global Assessment of Severity
of Epilepsy (GASE) [9] and Global Assessment of Disability (GAD) [10]
investigated how PWE perceive the impact of epilepsy on their lives and
health.
Both the GASE and the GAD scales were developed in Canada, and
are single-item self-report instruments that capture a patient’s
perspective using a seven-point Likert-type categorical response option
[9,11]. The GASE scale is designed to evaluate epilepsy severity, and the
GAD scale rates seizure-related disability in a quick and standardised
manner, assessing the disability imposed by epileptic seizures on a pa­
tient’s daily life and how it affects their QoL [10]. The GASE scale has
been validated in children and adults, and the GAD in adults only. Both
have since been translated and cross-culturally adapted to French Ca­
nadian and Swedish [12].
This study aimed to (1) perform a cross-cultural adaptation of the
GASE and GAD scales to the Brazilian Portuguese language, and (2)
compare the patients’ results with that of their attending physicians,
since a patient’s perception of seizure severity and disability may be
different from that of an observer. While the definition and assessment
of epilepsy severity and disability remain a major challenge in outcomes
research in epilepsy, we believe that the availability of these assessments
will enable and facilitate a patient-centred approach to epilepsy
treatment.
2. Material and methods
2.1. Study design and population
We conducted an observational, multicentre, cross-sectional study.
Clinical, demographic, and socioeconomic status [13] data were ob­
tained from consecutive patients followed up in five epilepsy centres in
Santa Catarina (a province localised in southern Brazil, with approxi­
mately 7 million people), coordinated by board-certified epileptologists
and/or clinical neurophysiologists (DAF, GSM, KL, RH, RW, VLB): (1)
Hospital Universitário Polydoro Ernani de São Thiago (HUPEST/UFSC),
Florianópolis; (2) Hospital Governador Celso Ramos (HGCR/SES), Flo­
rianópolis; (3) Hospital Santa Isabel (HSI), Blumenau; (4) Hospital
Municipal São José (HMSJ), Joinville; and (5) Hospital Regional de São
José Dr Homero de Miranda Gomes (HRSJ), São José.
Patients had to fulfil all of the following criteria: age ≥ 18 years at
the time of recruitment, a diagnosis of epilepsy according to the Inter­
national League Against Epilepsy’s criteria [14–16], followed up for at
least one year at the epilepsy centre, could provide consent, and had the
cognitive and physical capability to complete self-administered ques­
tionnaires without help.
A total of 138 individuals (sample size with 90% power to find a
correlation as low as r = 0.3, and alpha = 0.05) were recruited from
August 2018 to October 2020, who completed the Brazilian Portuguese
GASE and GAD questionnaires as well as tests for the diagnosis of anx­
iety and depression (HADS) [17], and for an adverse events profile
(AEP) [18], both previously validated in Brazil.
Additionally, the attending physicians of these patients were also
invited to complete the GASE and the GAD scales regarding their
94
Seizure: European Journal of Epilepsy 90 (2021) 93–98
patients, as well as to provide their demographic information.
2.2. Translation and cross-cultural adaptation of the GASE and GAD
scales
Cross-cultural adaptation aims to ensure content equivalence be­
tween the original language and target language in the translation
process, both from a linguistic and cultural perspective. A process of
cross-cultural adaptation was carried out in five stages, according to
standardised methods [19]:
1 Initial translation: Two translations were made from the original
language to the target language. This allowed comparisons between
both translations and checks for possible discrepancies in the adap­
tation process. The translations were performed by two different
translators, one of whom was familiar with the concepts used in the
questionnaire and another who was not, the so-called naïve
translator.
2 Synthesis of the translations: The two translators, together with a
third observer, synthesised the translations and prepared a report
describing the translation process, including any difficulties
encountered and how they were solved, thus generating one
consistent translation.
3 Back-translation: Based on the results of the two previously
generated translations, two other individuals fluent in English who
were unfamiliar with the test performed a back-translation from the
target language to its original language. This process sought to
ensure that the translated version was equivalent to its original
version.
4 Expert committee: A team composed of experts in methodology,
health professionals, and translators checked for discrepancies be­
tween the original document and its translated version, ensuring its
linguistic and cultural consistency and validity.
5 Testing the prefinal version: The prefinal version was provided to
patients from the target setting, to assess its clarity and usability. To
this end, 30 patients from the epilepsy outpatient clinic of the Uni­
versity Hospital/Federal University of Santa Catarina (HU/UFSC)
were randomly selected.
2.3. Statistical analysis
Statistical analysis was performed using IBM SPSS® Statistics Grad
Pack software premium version 27.0. Variables were tested for
normality using the Kolmogorov-Smirnov test. Subsequent parametric
(Student’s t-test, Pearson’s correlation) and non-parametric (Mann-
Whitney U, Spearman’s correlation) tests were applied accordingly.
Variables with a normal distribution are shown as the mean ± standard
deviation (SD; minimum-maximum), while variables with a non-normal
distribution are reported as the median with an interquartile range
(IQR). We used linear regression to analyse the predictive value of GASE
and GAD provided by physicians on the self-reported scores of the pa­
tients. A p-value of <0.05 was considered statistically significant.
2.4. Ethics
This study was carried out in accordance with the Code of Ethics of
the World Medical Association (Declaration of Helsinki, 2014). The
institutional review boards and ethics committees of each site approved
the study protocol (Coordinating Centre, CEPSH/UFSC approval proto­
col number 2.908.067). All subjects signed an informed consent form
and voluntarily agreed to participate.
3. Results
A Brazilian epileptologist (KL) and an undergraduate student (CDC)
with proficiency in both languages translated the original GASE and
E.P. Duarte et al. Seizure: European Journal of Epilepsy 90 (2021) 93–98

GAD questionnaires from English to Portuguese. Both translators, response options varying from “not at all disabling” to “extremely
together with another undergraduate student (BSM), synthesised the disabling”. The respondents considered the options difficult to sort out,
translations, generating one consistent translation for each assessment especially items 2 (“a little disabling”), 3 (“somewhat disabling”), 4
instrument. These steps were completed relatively easily since both in­ (“moderately disabling”) and 5 (“quite disabling”). The final version of
struments comprised a single question followed by seven short options, the scales, in Brazilian Portuguese, are shown in Box 1 and 2.
and their translations were straightforward and linguistically similar.
Then, two native English-speaking colleagues with proficiency in En­ 3.1. Box 1. Final version of the GASE in Brazilian Portuguese
glish and Portuguese back-translated the questionnaires, which reflected
the original meaning of both the GASE and the GAD [9,10]. Thereafter, a GASE (Avaliação Global da Gravidade da Epilepsia)
multidisciplinary team consisting of 13 individuals – among them two Considerando todos os aspectos da sua epilepsia, como você avaliaria
neurologists, six epileptologists, two health-related undergraduate stu­ a sua gravidade agora? Escolha uma das opções abaixo:
dents, a nurse, a pharmacist, and a psychologist – revised the translated
versions to ensure their linguistic and cultural consistency and, finally, a () 1– Nada grave
pilot study was performed with the prefinal version (step 5). () 2– Só um pouco grave
A total of 138 patients were assessed (52 from Hospital Universitário () 3– Um pouco grave
HU/UFSC, Florianópolis; 25 Hospital Santa Isabel, Blumenau; 25 Clínica () 4– Moderadamente grave
Neurológica, Joinville; 25 Hospital Regional de São José, São José; and () 5– Bastante grave
11 Hospital Governador Celso Ramos, Florianópolis), with a mean age of () 6– Muito grave
39.9. ± 13.81 years. Of these, 85 (61.6%) were female. Overall, the () 7– Extremamente grave
patients had a median of 11 (IQR = 7.5–12) years of education.
Most individuals had focal epilepsy (82.6%). Regarding treatment, 3.2. Box 2. Final version of the GAD in Brazilian Portuguese
49.3% of the patients received monotherapy, while the remaining pa­
tients used up to four ASMs. Patient demographics and clinical data are GAD (Avaliação Global da Incapacidade)
detailed in Table 1. Considerando todos os aspectos relacionados às suas crises, o quanto
a
mean ± SD (minimum-maximum); b median (IQR) elas são incapacitantes para você? Escolha uma das opções abaixo:
AEP, Liverpool adverse events profile; ASMs, antiseizure medica­
tions; HADS-A, Hospital Anxiety and Depression Scale - Anxiety; HADS- () 1– Nada incapacitante
D, Hospital Anxiety and Depression Scale - Depression; IQR, inter­ () 2– Só um pouco incapacitante
quartile range () 3– Um pouco incapacitante
*Respondents were classified into socioeconomic categories, using a () 4– Moderadamente incapacitante
nationally validated questionnaire based on their household posses­ () 5– Bastante incapacitante
sions. A and B categories: higher social status; C, D, or E: lower social () 6– Muito incapacitante
status [13]. () 7– Extremamente incapacitante
Only 5.8% and 3.6% of respondents reported having difficulty un­
derstanding the GASE and GAD, respectively. With reference to the For patients, the median score was 3 (IQR = 2–5) for self-perceived
GASE, the only two issues reported were related to the single-item GASE, and 4 (IQR = 2–6) for GAD (Fig. 1).
question “Taking into account all aspects of your epilepsy, how would you The self-perceived GASE was positively correlated with the GAD,
rate its severity now?”, regarding the words “aspectos” (translated from seizure frequency, number of ASMs, Liverpool AEP, HADS-A, and HADS-
the English word “aspects”) and “gravidade” (translated from the En­ D, while higher scores on the GAD were correlated with higher scores of
glish word “severity”) that eight patients required further explanation. the Liverpool AEP, HADS-A, and HADS-D (Table 2).
No patient had any doubts related to the seven-point Likert-type options. AEP, Liverpool adverse events profile; ASMs, antiseizure medica­
On the other hand, regarding the GAD, the only issue reported by five tions; GAD, global assessment of disability; GASE, global assessment of
respondents was related to the seven-point Likert-type categorical the severity of epilepsy; HADS-A, Hospital Anxiety and Depression Scale
- Anxiety; HADS-D, Hospital Anxiety and Depression Scale - Depression
There were no differences in the GASE (p = 0.14) or GAD (p = 0.73)
Table 1
Patient demographics and clinical characteristics. scores according to sex or GAD score (p = 0.50) in relation to epilepsy
type. Patients with focal epilepsy scored higher on the GASE than those
Characteristics Total (N = 138)
with generalised epilepsy (median = 3.0 versus 2.0, respectively; Mann-
Age, years a 39.9 ± 13.81 (16–73)
Sex, n (%) 85 (61.6) Female Whitney’s U = 650.500; p = 0.02). Additionally, there were no differ­
Years of education b 11 (7.5–12) ences in the GASE (p = 0.32) or GAD (p = 0.75) between patients who
Employment, n (%) 70 (50.7) Employed 60 (43.5) Unemployed, reported having difficulties in understanding the instrument compared
retired, on sick leave 8 (5.8) Student with those who understood the instrument adequately.
Socioeconomic status A = 5 (3.6) B = 43 (31.2) C = 79 (57.2) D and E =
according to IBGE*, n (%) 11 (8.0)
A total of 20 attending physicians providing care for these patients
Marital status, n (%) 64 (46.0) Married 46 (33.6) Single 6 (4.4) completed the GASE and the GAD scales. Among all patients, 108
Widower 14 (10.2) Divorced 8 (5.8) Other (78.3%) and 30 (21.7%) patients were seen by neurologists and general
Age of epilepsy onset, years b 15 (8.7–22.5) practitioners, respectively. The physicians had a median age of 33 (IQR
Epilepsy type, n (%) 114 (82.6) Focal 17 (12.3) Generalised 7 (5.1)
= 29–38) years and had a median of 9 (IQR = 5.2–13) years since
Unknown
Seizure frequency (per month) 0.6 (0–4) graduation. Importantly, the GASE (p = 0.94) and GAD (p = 0.86) scores
b did not differ when determined by neurologists or general practitioners.
Number of ASMs in current use Monotherapy (68; 49.3) 2 ASMs (41; 29.7) 3 ASMs The correlations between the self-perceived scores of the patients on
(n;%) (26; 18.8) 4 ASMs (3; 2.2) the GASE and GAD and their corresponding physicians’ ratings ranged
Known psychiatric 21 (15.2) Depression 19 (13,8) Anxiety 16 (11.6)
comorbidity, n (%) Depression and anxiety 3 (2.1) Others (Psychosis,
from moderate to high, and were statistically significant (Table 3,
Bipolar disorder) 79 (57.2) None Fig. 1).
AEP total (score) b 33 (24–41)
HADS-A (score) b 9 (5–12)
HADS-D (score) b 6 (3–9)

95
E.P. Duarte et al. Seizure: European Journal of Epilepsy 90 (2021) 93–98

Fig. 1. Distribution of (A) GASE and (B) GAD measures as perceived by patients and corresponding ratings by their attending physicians*
*A total of 20 attending physicians providing care for these patients completed the same questionnaires.

3.3. GAD, global assessment of disability; GASE, global assessment of the

Table 2
severity of epilepsy
Significant correlations between self-perceived scores on the GASE and GAD,
and other variables and instruments.
Linear regression demonstrated that GASE scores provided by phy­
GASE versus Spearman’s Rho (rs) p-value
sicians predicted 37% of the patients’ self-reported GASE variation [F
GAD 0.49 < 0.001
Seizure frequency 0.44 < 0.001
(1136) = 79.491, p < 0.001; R2 = 0.369], while GAD scores provided by
Number of ASMs 0.23 0.005 physicians predicted 20% of the patients’ self-reported GAD variation [F
AEP 0.28 0.001 (1136) = 34.550, p < 0.001; R2 = 0.203] (Table 3).
HADS-A 0.45 < 0.001
HADS-D 0.49 < 0.001
GAD versus Spearman’s Rho (rs) p-value 4. Discussion
AEP 0.18 0.03
HADS-A 0.39 < 0.001 This multicentric study, including PWE from five epilepsy centres in
HADS-D 0.31 < 0.001 Brazil in a catchment area with a population > 7 million, successfully
translated and cross-culturally adapted the GASE and GAD scales to
Brazilian Portuguese using standardised methods, and demonstrated
Table 3 that seizure severity (GASE), as perceived by PWE, is correlated with
Self-perceived scores on the GASE and GAD and those given by their attending their perception of disability (GAD). Additionally, individuals who self-
physicians. reported more disabling seizures were likely to have more anxiety and
R coefficient R2 coefficient p depressive symptoms and more adverse events related to ASM, while
Patient’s GASE x Physician’s GASE 0.63 0.37 < 0.001 seizure-related disability was not correlated with seizure frequency. In
Patient’s GAD x Physician’s GAD 0.45 0.20 < 0.001
contrast, higher epilepsy severity was correlated with a higher number
of seizures, higher number of ASMs, and higher AEP and HADS scores
(anxiety and depression). Furthermore, the perception of PWE regarding
the severity of epilepsy and seizure-related disability was endorsed by

96
E.P. Duarte et al.
their attending physicians since both the GASE and GAD scores self-
reported by patients and given by their attending physicians were
positively correlated.
The average age of the patients was 39 years and our population was
predominantly female. The Brazilian Institute of Geography and Statis­
tics (IBGE) [20] population estimates for 2020 also demonstrated a
predominantly young and female population in Brazil. Regarding edu­
cation, our data are consistent with the Santa Catarina’s population; the
interviewed patients had studied for a median of 11 years, which is
equivalent to secondary school. While IBGE data for the state of Santa
Catarina indicates that 48% of its population > 25 years old had
completed secondary/high school (12 years of education), a lower
percentage of 27% was found among the total Brazilian population. The
average age at epilepsy onset was 16 years, approximately the age at
which the PWE would be attending high school, potentially impacting
the continuity of their studies. Regarding socioeconomic status, most of
the patients (57%) belonged to IBGE’s category C, equivalent to a reg­
ular monthly income of 4 to 10 times the minimum wage (US$ 800 to
2000), which is in line with the general statistics of the Brazilian pop­
ulation [20].
The diagnosis of focal epilepsy corresponded to 82% of the studied
population. This is in agreement with previous findings that focal
epileptic seizures are the most prevalent seizure type among PWE [21].
Although a fair number of PWE have a satisfactory therapeutic response
to monotherapy [1,22], most patients in this study (51%) were taking
more than one ASM, which can be explained by the fact that the study
was conducted in tertiary health reference centres, predominantly in
people with pharmacoresistant epilepsy.
The Liverpool AEP aims to detect the prevalence of undesirable ef­
fects of ASM in PWE. This scale varies between 19 and 76 points, and the
higher the score, the greater the prevalence of unwanted effects [18,23].
It is well known that adverse medication effects have a negative impact
on patients’ QoL [24–26]. Our study demonstrated a median score of 33
points on the AEP scale, suggesting the presence of a moderate fre­
quency of ASM side effects [27–29].
The Hospital Anxiety Scale (HADS-A) and the Hospital Depression
Scale (HADS-D) were used to assess the possible impact of anxiety and
depression on PWE scores in the GASE and GAD. Scores over 7 in each
sub-scale indicate anxiety or depression. The median HADS-A and
HADS-D scores were 9 and 6 respectively, suggesting possible anxiety
disorder but not depressive symptoms. Anxiety and depression are the
most prevalent psychiatric comorbidities in adults with epilepsy,
affecting up to 30–50% of PWE, and should be promptly diagnosed and
appropriately treated [17,30,31].
Only 5% of the interviewed patients reported difficulty under­
standing the GASE, and 3% the GAD, indicating that the translation and
cross-cultural adaptation of these instruments was adequate. Education
levels did not influence the comprehension of these scales, which were
considered simple, quick, and easy to understand by most PWE. The
median score obtained in GASE was 3 (between ’somewhat severe’ and
’moderately severe’), and 4 in the GAD (between ’moderately disabling’
and ’quite disabling’). There was no correlation between the score ob­
tained in the GASE and GAD with age, sex, and educational status of the
patients, nor with age of epilepsy onset or type of epileptic seizure.
However, there was a statistically significant positive correlation be­
tween the GASE and seizure frequency, number of ASMs, and the AEP,
HADS-A, and HADS-D scores. Furthermore, the GAD scores correlated
with GASE and AEP, HADS-A, and HADS-D but not with seizure fre­
quency. Seizure frequency directly affects the QoL of PWE [9,26,32].
The adverse effects of medications and the presence of comorbidities
and psychiatric disorders contribute to impairments in patient
well-being [9,11,26,33].
Two studies carried out in Canada used GASE in paediatric PWE and
correlated the scale to seven clinical parameters: the frequency and in­
tensity of seizures, falls or injuries during seizures, severity of the post-
ictal period, amount of ASM used, medication side effects, and the
97
Seizure: European Journal of Epilepsy 90 (2021) 93–98
interference of the disease or medication in daily activities [9,11]. In the
study by Chan et al. [11], paediatric neurologists rated the severity of
epilepsy (GASE scale) and the seven clinical parameters listed above in
374 children aged between 4 and 12 years. They scored an average of
2.54, which is between ’a little severe’ and ’somewhat severe.’ Six of the
evaluated clinical parameters showed a moderate statistically signifi­
cant correlation with the GASE (p = 0.05), except for the amount of ASM
in use (p = 0.20), and the factors that most strongly associated with the
GASE scores were the frequency and intensity of epileptic seizures and
the interference of the disease or ASM in daily activities. Speechley et al.
[9] evaluated 134 children with epilepsy in the same cohort. Their
average age was 8.7 years with an average score of 3.3 on the GASE
scale, which is between ’somewhat severe’ and ’moderately severe.’
There was at least a moderate correlation, which was statistically sig­
nificant (p = 0.001), with the evaluated clinical aspects; the strongest
correlation occurred with seizure frequency.
In another study of 250 adult patients with a mean age of 39.8 years,
patients self-rated severity and disability using the GASE and GAD
scales, respectively. The mean GASE score was 2.23 – between ’a little
severe’ and ’somewhat severe’ – and there was a statistically significant
correlation (p < 0.05) between seizure-related disability, one-year
seizure freedom, number of ASMs, medication side effects, depression,
anxiety, and the GASE perceived by the patients [33], corroborating our
results.
In our study, the patients were mostly cared for by neurologists
(78.3%), but 21.7% were cared for by general practitioners (21.7%).
These professionals had a median age of 33 years and had a median of 9
years of experience following graduation. Notably, there was no dif­
ference in the scores provided by neurologists (specialists) and general
practitioners. This highlights the convenience of the GASE and GAD
scales, revealing that general practitioners also have a good grasp of
disease severity and patient disability. The self-reported scores of the
patients correlated moderately with the scores provided by their
attending physicians, also indicating consensus in the perception of the
severity of epilepsy and seizure-related disability between PWE and
health professionals. The GASE and GAD can be used to establish com­
mon/mutual therapeutic goals or as a guide for the selection of the most
appropriate interventions in patient-centred epilepsy management
[9–11,33]. Nonetheless, while we found a high correlation between
patient and physician responses on the GASE, the concept of “severity of
epilepsy” may be different from the concept of “disability related
directly to seizures” as measured by the GAD. Disability may be prom­
inently related to other variables rather than only clinical ones such as
seizure frequency, which was correlated with GASE, but not with GAD.
In fact, discrepancies may be observed between physician documenta­
tion and patient perceptions of care quality [34]. Incongruence between
physician and patient reports has been found even in clinical measures
related to aetiology and seizure type, and the discrepancy between these
two potential interpretations remains a challenge [34,35].
Few measures that focus on the severity of epilepsy and seizure-
related disability were specifically developed for PWE. Although this
study carefully and systematically collected data and self-reported out­
comes in consecutive patients, epilepsy severity and seizure-related
disability might be a multidimensional concept that may not be indi­
vidually grasped using single-item global rating scales. Other study
limitations include its cross-sectional nature and a relatively small
sample, predominantly from tertiary healthcare reference centres,
where most patients are pharmacoresistant, limiting the generalizability
of our results. Despite these limitations, our results corroborate previ­
ously published findings, demonstrating the external validity of both the
GASE and GAD scales in Brazil. Further research is needed to analyse the
clinical significance of these scores, and the responsiveness of the scales
to capture change over time.
E.P. Duarte et al.
5. Conclusion
In conclusion, the Brazilian Portuguese cross-cultural adaptation of
the GASE and GAD was successful, in accordance with the most recent
and accepted guidelines, with adequate comprehensibility, being easily
understood by most of the patients. These scales were found to be quick
and easy to use by patients and health professionals revealing the burden
of epilepsy on patient lives. Further research is needed to examine the
reliability, discriminant validity, and responsiveness of these in­
struments to longitudinal follow-up studies, and for the comparison with
established measures of seizure severity and disability.
Funding
This work was supported by the Programa de Apoio a Nucleos
Emergentes – KETODIET – SC Project – Process No 2020TR736 and
PRONEX Program (Programa de Núcleos de Excelência - NENASC
Project) from FAPESC-CNPq-MS, Santa Catarina, Brazil (Process No.
56802/2010)
Declaration of Competing Interest
There is no conflict of interest to declare
Acknowledgements
The authors: KL holds a CNPq (Brazilian Council for Scientific and
Technologic Development, Brazil) PQ2 Research Fellowship (Process
No. 304936/2017-0), and is supported by PRONEM (Programa de Apoio
a Nucleos Emergentes – KETODIET – SC Project – Process No
2020TR736) from FAPESC/CNPq, Santa Catarina Brazil; RW holds a
CNPq PQ1B Research Fellowship (Process No. 306043/2011-4) and is
supported by a grant from PRONEX Program (Programa de Núcleos de
Excelência - NENASC Project) from FAPESC-CNPq-MS, Santa Catarina,
Brazil (Process No. 56802/2010). We would like to thank Editage (www.
editage.com) for English language editing.
References
[1] Epilepsy: a public health imperative. Summary. Geneva: World Health
Organization. 2019. WHO/MSD/MER/19.2). ISBN: 978-92-4-151593-1.
[2] Mula M, Sander JW. Psychosocial aspects of epilepsy: a wider approach. BJPsych
Open 2016;2:270–4. https://doi.org/10.1192/bjpo.bp.115.002345.
[3] Kobau R, Cui W, Kadima N, Zack MM, Sajatovic M, Kaiboriboon K, et al. Tracking
psychosocial health in adults with epilepsy - estimates from the 2010 National
Health Interview Survey. Epilepsy Behav 2014;41:66–73. https://doi.org/
10.1016/j.yebeh.2014.08.002.
[4] Kaddumukasa M, Mugenyi L, Lhatoo S, Sewankambo N, Blixen C, Sajatovic M,
et al. Seizure severity is associated with poor quality of life in people living with
epilepsy (PLWE) in Uganda: a cross-sectional study. Epilepsy Behav 2019;96:
104–8. https://doi.org/10.1016/j.yebeh.2019.04.033.
[5] Fisher RS, Nune G, Roberts SE, Cramer JA. The Personal Impact of Epilepsy Scale
(PIES). Epilepsy Behav 2015;42:140–6. https://doi.org/10.1016/j.
yebeh.2014.09.060.
[6] Crossley J, Jacoby A, Baker GA. The reliability and validity of the Revised
Liverpool Impact of Epilepsy Scale for use in people with new-onset epilepsy.
Epilepsy Behav 2013;26:175–81. https://doi.org/10.1016/j.yebeh.2012.11.046.
[7] Duncan JS, Sander JW. The Chalfont Seizure severity scale. J Neurol Neurosurg
Psychiatry 1991;54:873–6. https://doi.org/10.1136/jnnp.54.10.873.
[8] Cramer JA, Perrine K, Devinsky O, Bryant-Comstock L, Meador K, Hermann B.
Development and cross-cultural translations of a 31-item quality of life in epilepsy
inventory. Epilepsia 1998;39:81–8. https://doi.org/10.1111/j.1528-1157.1998.
tb01278.x.
[9] Speechley KN, Sang X, Levin S, Zou GY, Eliasziw M, Lou Smith M, et al. Assessing
severity of epilepsy in children: preliminary evidence of validity and reliability of a
single-item scale. Epilepsy Behav 2008;13:337–42. https://doi.org/10.1016/j.
yebeh.2008.05.001.
98
Seizure: European Journal of Epilepsy 90 (2021) 93–98
[10] Sajobi TT, Jette N, Fiest KM, Patten SB, Engbers JD, Lowerison MW, et al.
Correlates of disability related to seizures in persons with epilepsy. Epilepsia 2015;
56:1463–9. https://doi.org/10.1111/epi.13102.
[11] Chan CJ, Zou G, Wiebe S, Speechley KN. Global assessment of the severity of
epilepsy (GASE) scale in children: validity, reliability, responsiveness. Epilepsia
2015;56:1950–6. https://doi.org/10.1111/epi.13216.
[12] Wiebe S, Wahby S, Lawal OA, Sajobi TT, Keezer MR, Nguyen DK, et al.
Development and validation of the Epilepsy Surgery Satisfaction Questionnaire
(ESSQ-19). Epilepsia 2020;00:1–10. https://doi.org/10.1111/epi.16709.
[13] Associação Brasileira de Empresas de Pesquisa. Critério brasil 2015 e atualização
da distribuição de classes para. 2016. Site, http://www.abep.org/criterio-brasil.
Accessed in 06 December 2020.
[14] Fisher RS, Acevedo C, Arzimanoglou A, Bogacz A, Cross JH, Elger CE, et al. ILAE
official report: a practical clinical definition of epilepsy. Epilepsia 2014;55:475–82.
https://doi.org/10.1111/epi.12550.
[15] Fisher RS, Cross JH, French JA, Higurashi N, Hirsch E, Jansen FE, et al. Operational
classification of seizure types by the International League Against Epilepsy:
position paper of the ILAE Commission for Classification and Terminology.
Epilepsia 2017;58:522–30. https://doi.org/10.1111/epi.13670.
[16] Scheffer I, Berkovic S, Capovilla G, et al. ILAE classification of the epilepsies:
position paper of the ILAE Commission for Classification and Terminology.
Epilepsia 2017;58:512–21. https://doi.org/10.1111/epi.13709.
[17] Botega NJ, Pondé MP, Medeiros P, Lima MG, Guerreiro CAM. Validação da escala
hospitalar de ansiedade e depressão (HAD) em pacientes epilépticos ambulatoriais.
J Bras Psiquiatria 1998;47:285–9.
[18] Martins HH, Alonso NB, Vidal-Dourado M, Carbonel TD, Araújo Filho GM,
Caboclo LO, et al. Are adverse effects of antiepileptic drugs different in
symptomatic partial and idiopathic generalized epilepsies? The
Portuguese–Brazilian validation of the Liverpool Adverse Events Profile. Epilepsy
Behav 2011;22:511–7. https://doi.org/10.1016/j.yebeh.2011.08.005.
[19] Beaton DE, Bombardier C, Guillemin F, Ferraz MB. Guidelines for the process of
cross-cultural adaptation of self-report measures. Spine 2000;25:3186–91. https://
doi.org/10.1097/00007632-200012150-00014.
[20] IGBE, 2020. Site: https://www.ibge.gov.br/estatisticas/sociais/populacao.html.
Accessed in 06 December 2020.
[21] Skidmore CT. Adult focal epilepsies. Continuum: lifelong learning in Neurology
2016;22:94–115. https://doi.org/10.1212/con.0000000000000290.
[22] Chen Z, Brodie MJ, Liew D, Kwan P. Treatment outcomes in patients with newly
diagnosed epilepsy treated with established and new antiepileptic drugs: a 30-year
longitudinal cohort study. JAMA Neurol 2018;75:279–86. https://doi.org/
10.1001/jamaneurol.2017.3949.
[23] Panelli RJ, Kilpatrick C, Moore SM, Matkovic Z, D’Souza WJ, O’Brien TJ. The
Liverpool adverse events profile: relation to AED use and mood. Epilepsia 2007;48:
456–63. https://doi.org/10.1111/j.1528-1167.2006.00956.x.
[24] Carter J, Vahle V. Adverse antiepileptic drug effects: toward a clinically and
neurobiologically relevant taxonomy. Neurology 2009;047551:1223–9. https://
doi.org/10.1212/01.wnl.0000345667.45642.61.
[25] Perucca P, Gilliam FG. Adverse effects of antiepileptic drugs. Lancet Neurol 2012;
11:792–802. https://doi.org/10.1016/S1474-4422(12)70153-9.
[26] Baker GA, Jacoby A, Buck D. Quality of life of people with epilepsy: a European
study. Epilepsia 1997;38:353–62. https://doi.org/10.1111/j.1528-1157.1997.
tb01128.x.
[27] Canevini MP, Sarro GD, Galimberti CA, Gatti G, Licchetta L, Malerba A, et al.
Relationship between adverse effects of antiepileptic drugs, number of
coprescribed drugs, and drug load in a large cohort of consecutive patients with
drug-refractory epilepsy. Epilepsia 2010;51:797–804. https://doi.org/10.1111/
j.1528-1167.2010.02520.x.
[28] Budikayanti A, Qadri LM, Syeban Z, Indrawati LA, Octaviana F. Adverse events of
antiepileptic drugs using indonesian version of Liverpool adverse events profile.
Neurol Res Int 2018;2018:1–6. https://doi.org/10.1155/2018/8490639.
[29] Joshi R, Tripathi M, Gupta P, Gulati S, Gupta YK. Adverse effects & drug load of
antiepileptic drugs in patients with epilepsy: monotherapy versus polytherapy.
Indian J Med Res 2017;145:317–26. https://doi.org/10.4103/ijmr.IJMR_710_15.
[30] Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr
Scand 1983;67:361–70. https://doi.org/10.1111/j.1600-0447.1983.tb09716.x.
[31] Snaith RP. The hospital anxiety and depression scale. Health Qual Life Outcomes
2003;4:6–9. https://doi.org/10.1186/1477-7525-1-29.
[32] Salgado PCB, De Souza EAP. Qualidade de vida em epilepsia e percepção de
controle de crises. Arq Neuropsiquiatr 2001;59:537–40. 10.1590/S0004-
282×2001000400010.
[33] Sajobi TT, Jette N, Zhang Y, Patten SB, Fiest KM, Engbers JDT, et al. Determinants
of disease severity in adults with epilepsy: results from the neurological diseases
and depression study. Epilepsy Behav 2015;51:170–5. https://doi.org/10.1016/j.
yebeh.2015.07.036.
[34] Moura LMVR, Carneiro TS, Thorn EL, Seitz MP, Hsu J, Cole AJ, et al. Patient
perceptions of physician-documented quality care in epilepsy. Epilepsy Behav
2016;62:90–6. https://doi.org/10.1016/j.yebeh.2016.06.024.
[35] Gilliam F, Penovich PE, Eagan CA, Stern JM, Labiner DM, Onofrey M, et al.
Conversations between community-based neurologists and patients with epilepsy:
results of an observational linguistic study. Epilepsy Behav 2009;16:315–20.
https://doi.org/10.1016/j.yebeh.2009.07.039.