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Seizure
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Department of Neurology, Asan Medical Center, University of Ulsan College of Medicine, Seoul, Republic of Korea
Department of Neurology, Gangneung Asan Hospital, University of Ulsan College of Medicine, Gangneung, Republic of Korea
c
Department of Neurology, Ulsan University Hospital, University of Ulsan College of Medicine, Ulsan, Republic of Korea
b
A R T I C L E I N F O
A B S T R A C T
Article history:
Received 19 May 2010
Received in revised form 1 September 2010
Accepted 10 September 2010
Purpose: To describe the concerns of Korean adults living with epilepsy and to compare the concerns of
individuals with controlled and uncontrolled seizures.
Methods: Outpatients lled out questionnaires, including the Hospital Anxiety and Depression Scale, the
Quality of Life in Epilepsy-10 questionnaire, the stigma scale, and a questionnaire on episodes of
discrimination. Patients were asked to ll out the Epilepsy Foundation of America (EFA) Concerns Index
and to list their concerns on a blank sheet of paper.
Results: Of the 178 participants, 152 described a total of 470 concerns, which could be assorted into 25
distinct concerns. Worrying about the hereditability of their condition was the only concern that differed
signicantly between individuals with controlled and uncontrolled seizures. Three signicant factors
were identied on the total EFA Concerns Index score: level of anxiety/depression (34.4%), age (6.3%),
and degree of social discrimination (4.3%), resulting in a total explained variance of 45.0%.
Conclusions: Korean adults with epilepsy had various concerns, with some differing from those in
Western populations. Anxiety/depression, age and degree of discrimination were signicantly
associated with the degree of concern in Korean patients with epilepsy.
2010 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved.
Keywords:
Epilepsy
Concerns
Quality of life
1. Introduction
Epilepsy is one of the most common neurological disorders and
continues to be an often misunderstood and stigmatizing
condition. Although seizure control is crucially important to the
management of epilepsy, there has been increasing attention to
wider quality of life (QOL) issues. Several standardized healthrelated QOL measures have been developed for people with
epilepsy13; however, their use has been criticized because most of
these instruments were not developed using a systematic
assessment of direct patient feedback with respect to their issues
and concerns of living with epilepsy.4
After a comprehensive review of studies, including QOL
outcome variables, Gill and Feinstein4 proposed that devising
suitable creative strategies to ascertain, incorporate and weigh
patients preferences is one of the fundamental intellectual
challenges facing QOL researchers today. Leplege and Hunt5
further emphasized that the argument that it is the patients who
are replying to questions designed by experts is not sufcient to
claim that the scores reect the patients viewpoint. These
1059-1311/$ see front matter 2010 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved.
doi:10.1016/j.seizure.2010.09.010
15
Table 1
Demographic and clinical features of 178 epilepsy patients.
Male
Age (year)
Age at onset (year)
Duration (year)
Epilepsy classication
Idiopathic generalized
Cryptogenic/symptomatic partial
Undetermined or others
Taking monotherapy
Seizure frequency
<1/year
111/year
1/month
Generalized tonic clonic seizures in the last 2 years
More than 90% of seizures during sleep
Injury in the last 1 year
Married
Employed
Education status
Primary or middle school
High school
University
Missing value
Economic status
High
Middle
Low
Missing value
Having religion
104 (58.4%)
37.9 (range, 1869)
22.4 (range, 260)
15.2 (range, 146)
31
132
15
81
(17.4%)
(74.2%)
(8.4%)
(45.5%)
63
78
37
148
33
16
90
140
(35.4%)
(43.8%)
(20.8%)
(83.1%)
(18.5%)
(9%)
(50.6%)
(78.7%)
29
82
65
2
(16.3%)
(46.1%)
(36.5%)
(1.1%)
7
121
48
2
89
(3.9%)
(68%)
(27%)
(1.1%)
(50%)
16
Table 2
Patients listing concerns (%).
Table 4
Multivariate stepwise linear regression analysis of total EFA Concerns Index score.
Total
N = 152
(%)
Seizure frequency
<1/year
N = 51
(%)
1/year
N = 101
(%)
24.3
22.4
19.7
25.5
27.5
13.7
23.8
19.8
22.8
19.1
15.7
20.8
19.1
16.4
16.4
16.4
15.8
14.5
13.8
13.8
13.8
13.2
11.8
11.8
11.2
17.6
19.6
13.7
11.8
13.7
15.7
9.8
13.7
15.7
13.7
15.7
19.6
5.9
19.8
14.9
17.8
18.8
16.8
13.9
15.8
13.9
12.9
12.9
9.9
7.9
13.9
10.5
9.8
10.9
were having a seizure unexpectedly (9.9%), psychological problems including depression (9.9%), worry about having another
seizure (7.9%), and fear of being injured during a seizure (7.9%).
3.2. Factors contributing to patients concerns
The mean total EFA Concerns Index score was 54.8 (SD = 18.7)
and was signicantly related to overall QOL (r = 0.559, p < 0.001).
Pearson correlation test showed that total EFA Concerns Index score
was signicantly related to age (r = 0.188, p = 0.012), age at seizure
onset (r = 0.204, p = 0.008), degree of discrimination (r = 0.498,
p < 0.001), perceived stigma (r = 0.440, p < 0.001), and anxiety/
depression (r = 0.599, p < 0.001). Students t-test revealed that total
EFA Concerns Index scores were signicantly higher in patients with
polytherapy (p < 0.001), frequent seizures (p = 0.001), history of
seizure-related injury during the past year (p = 0.001), unmarried
Table 3
Patients listing concern as most important (%).
Total
N = 152
(%)
Seizure frequency
<1/year
N = 51
(%)
1/year
N = 101
(%)
10.5
11.8
9.9
9.9
9.2
9.8
13.7
9.9
6.9
7.9
3.9
9.9
6.6
6.6
5.3
5.3
5.3
9.8
3.9
5.9
3.9
3.9
5.0
7.9
5.0
5.9
5.9
5.3
3.9
5.9
Constant
Anxiety/depression
Age
Discrimination
Coefcient
Standard
error
Test
statistic
R2 (%)
p value
52.313
1.220
0.446
3.247
4.526
0.166
0.110
0.926
11.559
7.329
4.060
3.507
34.4
+6.3
+4.3
<0.001
<0.001
<0.001
0.001
17
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