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The effect of self-management training on health-related quality of life in patients with epilepsy
Epilepsy & Behavior 50 (2015) 108–112
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Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh
The effect of self-management training on health-related quality of life in patients with epilepsy Mohammad Ali Yadegary a,⁎, Farhad Golipour Maemodan b,1, Nahid Dehghan Nayeri c,2, Azam Ghanjekhanlo d,3 a
School of Nursing and Midwifery, Tehran University of Medical Sciences, Tehran, Iran Zanjan University Medical Sciences, Valiasr Hospital, Neurology Department, Zanjan, Iran Tehran University of Medical Sciences, Nursing Management Department, Nursing and Midwifery Care Research Center, Tehran, Iran d Zanjan University Medical Sciences, Emam Hossein, Zanjan,Iran b c
a r t i c l e
i n f o
Article history: Received 11 November 2014 Revised 24 February 2015 Accepted 21 April 2015 Available online xxxx Keywords: Self-management training Patients with epilepsy Health-related quality of life
a b s t r a c t Purpose: Epilepsy is the most common chronic neurological disease after headache. Health-related quality of life in patients with epilepsy is disturbed by psychosocial factors, seizures, and treatment side effects. This study was conducted to determine the effect of a self-management training program on quality of life in patients with epilepsy. Methods: In this controlled clinical trial, 60 patients with epilepsy going to Zanjan Neurology Clinic were examined. The samples were selected using convenience sampling and divided randomly into the case group (30 people) and control group (30 people) using the table of random numbers. Four training sessions on the nature of epilepsy and self-managementwere run for the case group. All the patients completed an inventory for quality of life twice: before and one month after the intervention. The data were analyzed using the chisquare test, independent t-test, and paired t-test. Results: There was no statistically significant difference between the two groups before the intervention in terms of personal specifications and scores and dimensions of the quality of life. One month after the intervention, a statistically significant difference was observed between the two groups in terms of the scores and dimensions of quality of life that indicated improved quality of life in the case group (P b 0.001). Conclusion: The self-management training program improved the quality of life in patients with epilepsy. The present findings highlight that psychosocial variables can have incremental significance over biomedical variables in the health-related quality of life of patients with epilepsy. © 2015 The Authors. Published by Elsevier Inc. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
1. Introduction Epilepsy is a chronic neurological disease characterized by frequent seizures that vary in terms of frequency, severity, and prognosis [1]. It is the most common chronic neurological disease after headache, and 2–5% of people experience an epileptic seizure in their lifetime. The prevalence rate of epilepsy is 0.1–0.4%, and it is higher in developing countries than developed countries [2]. Epilepsy is not only a medical condition but also a social problem, and previous studies on quality of life in patients with epilepsy showed that patients were influenced by social and cultural negative effects, as well as frequent seizures [3–6].
⁎ Corresponding author. Tel.: +98 9125422497. E-mail addresses: [email protected] (M.A. Yadegary), [email protected] (F.G. Maemodan), [email protected] (N.D. Nayeri), [email protected] (A. Ghanjekhanlo). 1 Tel.:+98 9121415193. 2 Tel.:+98 9124069465. 3 Tel.:+98 9125425168.
The traditional treatment of epilepsy often emphasizes the medical aspects of epilepsy and control of seizures through medication therapy and pays little attention to the effects of epilepsy on patients' daily life, such as patients' perception of the disorder, coping with the disease and its treatment, and ability to treat complications of epilepsy, although the psychosocial problems of epilepsy may be more disruptive than its physical symptoms for patients [3]. Epilepsy influences many dimensions of quality of life [7,8]. Studies showed that patients with epilepsy experienced lower quality of life than normal people [9,10], and quality of life in patients with epilepsy was even lower than that in patients with other chronic diseases [11]. Epilepsy presents an identity of exclusion, which, at multiple levels, hinders the ability to engage with one's community [12]. The important factors influencing the quality of life of patients with epilepsy include behavioral, mental, and cognitive conditions; the ability to work; social functioning; family stability; self-esteem; social stigma; and coping with the disease. Even if seizures are controlled, psychosocial problems and the effects of antiepileptic drugs largely affect patients' quality of life [13]. While is a correlation between a patient’s knowledge about
http://dx.doi.org/10.1016/j.yebeh.2015.04.051 1525-5050/© 2015 The Authors. Published by Elsevier Inc. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
M.A. Yadegary et al. / Epilepsy & Behavior 50 (2015) 108–112
epilepsy and their ability to cope with the disease; studies suggest that patient knowledge about epilepsy is generally limited [14]. Numerous training programs have been developed for providing comprehensive care to patients with epilepsy [15]. Several training programs have been developed for patients with epilepsy in Iran, and studies showed their effectiveness on self-management and patients' satisfaction but not on their quality of life. Furthermore, conventional studies on pathogenicity, mortality, and life expectancy are not sufficient for health assessments any longer, and consequently, quality of life has received more attention in recent assessments of health-care services. Today, the improvement of the quality of life of patients with chronic epilepsy is facilitated by specific questionnaires that have been developed for evaluating their quality of life [16,17]. Many of those questionnaires have been translated into Persian. However, most of the studies on quality of life were performed in western countries, and the information about quality of life in eastern and developing countries is limited to descriptive studies. A study conducted in Taiwan reported low quality of life in patients with epilepsy in some dimensions including physical and psychosocial dimensions, independence, and social relations [1]. Moreover, an extensive study performed in Iran and Persian Gulf countries (Bahrain, Kuwait, Oman, Qatar, Cyprus, Jordan, Lebanon, Syria, and the United Arabic Emirates) revealed that patients with epilepsy had low quality of life in dimensions such as physical and social dimensions and energy [7]. Given that previous studies showed low quality of life in patients with epilepsy and few studies were performed to improve quality of life, the researchers conducted this study to determine the effect of a self-management training program on quality of life in patients with epilepsy. 2. Methods In this controlled clinical trial conducted in a teaching hospital in Zanjan, Iran, 60 patients with epilepsy were selected using simple random sampling and divided randomly into the case group (30 people) and the control group (30 people) using the table of random numbers. We calculated the sample size based on the study conducted by Pramuka et al. [18] on patients with epilepsy and using α = 0.05 and power = 80%. The mean QOL of that study using QOLIE-31-P (see below) was 67.3 ± 2.6 in the case group and 65 ± 2.8 in the control group. The sample size was calculated as 30 in each group [18]. The inclusion criteria of the study were as follows: age between 18 and 65 years, suffering epilepsy for at least 1 year; using antiepileptic drugs experience of at least one seizure during the last year, ability to read and write, and willingness to participate in the study. The exclusion criteria were as follows: presence of conditions in which patients need intensive care, participation in other studies, and absence from each training session. The study setting was an educational medical center selected in order to have easy access to patients with epilepsy, abundance of samples, easy data collection, and an appropriate educational environment. The data were collected using a demographic information form and the standardized inventory for QOL in patients with epilepsy (QOLIE31-P). The inventory contains 31 items measuring 7 dimensions of QOL and one general item examining the importance of the dimensions related to the disease. The dimensions of the inventory are as follows: seizure worry, mental health, energy/fatigue, cognitive functioning, medication effects, social functioning, and the overall QOL. The score of each scale is measured according to the scoring guide of the inventory. The scores range from 0–100, with higher scores indicating higher QOL. The reliability and validity of this scale have already been evaluated in Iran, and the reliability of most of the dimensions is confirmed [19]. To respect ethics, a written permit was adopted from the translator of the inventory. The training materials consisted of two parts. The first part that was provided in the first session was about the medical aspects of epilepsy including the definition of epilepsy, description of seizures, types of seizures, observation and classification of its causes, and
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diagnosis of epilepsy. Moreover, the case group received an epilepsy instructional booklet containing the content of the training program. The second part that was provided within three sessions for promoting selfmanagement was about medication management, information management, safety management, lifestyle management, and seizure management. The materials were presented face-to-face using PowerPoint presentations. These materials were already prepared by Aliasgharpour et al., its face validity on 15 patients with epilepsy had been confirmed, and it had been examined and revised in terms of readability, fluency, and understandability. Their study showed that the training had significant effects on the self-management of patients with epilepsy [20]. The patients in the case group received both the routine care and the training intervention for improvement of self-management. To do so, they were divided into 5 groups (5–6 patients in each group) and received the training intervention within four 2-hour sessions in one month. We phoned the entire group before every session to encourage them to attend. The participants completed the inventory for QOL (QOLIE31-P) before and one month after the intervention. The control group received only the routine clinical care and was contacted only through two short phone calls during the month. The case group received the intervention. All of the participants in the two groups completed the study. The groups filled out the posttest when they referred to the center for their treatment. 2.1. Data analysis procedures The main variables of this study were the independent variable of selfmanagement training and dependent variable of quality of life. To obtain the objectives, the data were analyzed with descriptive statistics, and comparison of variables and finding their correlations were done using inferential statistics. Therefore, the chi-square test was used to compare the two groups in terms of the demographic characteristics, the paired t-test was used to measure quality of life in each group (before and after the intervention), and the independent t-test was used to compare the quality of life of the two groups at the same time. The statistical analysis of the data was performed using the SPSS16 software. 3. Results The 60 patients with epilepsy were randomly divided into the case group (30 patients) and control group (30 patients). The results showed that of the participants, 61.7% were 18–25 years old, 51.7% were male, 61.7% were single, 41.7% were working, and 55% did not have a high school diploma. Moreover, of the participants, 95% had generalized seizures, 58.3% experienced seizures during the last month, 45% experienced one seizure during the last year, and 71.7% used one drug to control seizures. The patients in the two groups did not have any significant differences in terms of all demographic specifications and disease symptoms (Table 1). The results of the independent t-test before the intervention did not show any significant difference in the case and control groups for the total quality of life (t = 0.772,df = 58, p = 0.444) and dimensions of quality of life: overall quality of life (t = 0.679,df = 58, p = 0.500); social functioning (t = 1.23,df = 58, p = 0.221); medication effects (t = 0.424,df = 58, p = 0.673); cognitive functioning (t = 0.185,df = 58, p = 0.854); energy/fatigue (t = 1.258,df = 58, p = 0.214); mental health (t = 0.644,df = 58, p = 0.522); and worry about seizures (t = 0.343,df = 58, p = 0.733). In other words, the two groups were matched in terms of the total quality of life and its dimensions. However, the results of the independent t-test after the intervention revealed a significant difference in the case and control groups for the total quality of life (t = 5.22,df = 58, p b 0.001) and dimensions of quality of life: overall quality of life (t = 5.47,df = 58, p = 0.004); social functioning (t = 2.11,df = 58, p = 0.039); medication effects (t = 7.004,df = 58, p b 0.001); cognitive functioning (t = 2.54,df = 58, p = 0.014); energy/fatigue (t = 5.54,df = 58,
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Table 1 Frequency distribution of demographic characteristics and disease symptoms of the patients with epilepsy in the case and control groups. Demographic characteristics
Group
Result
Case group
Age
18–25 years 26–35 years 36–45 years 46–65 years Female Male Married Single Other Employed Unemployed Housewife Reading and writing Less than high school High school diploma University degree Good Moderate Bad Under 12 years 13–22 years 23–32 years Over 33 years Partial Generalized 1–2 times a month 3–5 times a month Over 5 times a month Once a year 2 times a year Last 1 month Last 1–6 months Last 6–12 months One More than one
Sex Marital status
Employment status
Education
Economic condition
Age at seizure onset
Type of seizure Number of seizures
Time of the last seizure
Number of medications
Control group
Number
Percentage
Number
Percentage
9 12 7 2 14 16 10 16 4 13 9 8 6 11 9 4 5 18 7 8 16 4 2 2 28 5 2 0 13 10 17 4 9 20 10
30.00 40.00 23.30 6.70 46.70 53.30 33.30 53.40 13.30 43.30 30.00 26.70 20.00 36.70 30.00 13.30 16.70 60.00 23.30 26.70 53.30 13.30 6.70 6.70 93.30 16.70 6.70 0 43.30 33.30 56.70 13.30 30.00 99.70 33.30
12 8 5 5 15 15 12 16 2 11 15 4 8 10 6 6 10 16 4 6 18 4 2 1 29 4 0 2 14 10 17 6 7 23 7
40.00 26.60 16.70 17.70 50.00 50.00 40.00 53.40 6.70 36.70 50.00 13.30 26.70 33.30 20.00 20.00 33.30 53.30 13.30 20.00 60.00 13.30 6.70 3.30 96.70 13.30 0 6.70 46.70 33.30 56.70 20.00 23.30 76.70 23.30
p b 0.001); mental health (t = 8.57,df = 58, p b 0.001); and worry about seizures (t = 8.65,df = 58, p b 0.001). Moreover, the paired t-test before and after the intervention in the case group showed a significant difference between the total quality of life (t = 8.60,df = 29, p b 0.001) and dimensions of quality of life: overall quality of life (t = 6.61,df = 29, p b 0.001); social functioning (t = 4.14,df = 29, p b 0.001); medication effects (t = 7.71,df = 29, p b 0.001); cognitive functioning (t = 3.79,df = 29, p b 0.001); energy/fatigue (t = 7.50,df = 29, p b 0.001);
t-test t = 0.210 df = 58 p = 0.834 Fisher's exact test p = 0.703 Fisher's exact test p = 0.703 Fisher's exact test p = 0.21 χ2 = 1.33 df = 3 p = 0.721 χ2 = 2.60 df = 2 p = 0.272 t = 1.23 df = 58 p = 0.162 Fisher's exact test p=1 Fisher's exact test p = 0.536
Fisher's exact test p = 0.728 Fisher's exact test p = 0.567
mental health (t = 7.91,df = 29, p b 0.001); and worry about seizures (t = 11.20,df = 29, p b 0.001). However, the paired t-test before and after the intervention in the control group did not show any significant difference between the total quality of life (t = 0.501,df = 29, p = 0.620) and dimensions of quality of life: overall quality of life (t = 1.34,df = 29, p = 0.189); social functioning (t = 0.310,df = 29, p = 0.759); medication effects (t = 0.585,df = 29, p = 0.563); cognitive functioning (t = 0.984,df = 29, p = 0.333); energy/fatigue (t =
Table 2 Comparison of the mean and standard deviation of the scores of quality of life and its dimensions in patients with epilepsy in the case and control groups before and after the intervention. Quality of life and its dimensions
Before the intervention
After the intervention
Overall quality of life Social functioning Medication effects Cognitive functioning Energy–fatigue Mental health Worry about seizure Total quality of life Overall quality of life Social functioning Medication effects Cognitive functioning Energy–fatigue Mental health Worry about seizure Total quality of life
Case group
Control group
Independent t-test/p-value
Mean
Standard deviation
Mean
Standard deviation
53.41 54.77 44.62 50.38 47.66 48.13 22.60 48.67 73.66 75.36 75.37 68.92 73.83 72.53 67.93 72.18
22.77 23.23 22.28 22.92 21.52 18.59 23.59 15.04 13.84 19.84 11.41 19.61 12.15 9.02 10.63 11.34
56.83 62.23 47.49 49.19 54.16 51.60 24.78 51.85 61.25 63.46 44.35 53.93 50.33 47.46 31.79 53.49
15.50 23.47 29.61 26.85 18.38 22.90 25.56 17.79 18.32 23.52 21.41 25.67 19.78 13.23 20.23 15.97
0.500 0.221 0.673 0.854 0.214 0.522 0.733 0.444 0.004 0.039 b0.001 0.014 b0.001 b0.001 b0.001 b0.001
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Table 3 Comparison of the mean and standard deviation of the scores of quality of life and its dimensions in patients with epilepsy in the case and control groups before and after the intervention. Quality of life and its dimensions
Case group
Control group
Overall quality of life Social functioning Medication effects Cognitive functioning Energy–fatigue Mental health Worry about seizure Total quality of life Overall quality of life Social functioning Medication effects Cognitive functioning Energy–fatigue Mental health Worry about seizure Total quality of life
Before intervention
After intervention
Mean
Standard deviation
Mean
Standard deviation
53.41 54.77 44.62 50.38 47.66 48.13 22.60 48.67 56.83 62.23 47.49 49.19 54.16 51.60 24.78 51.95
22.77 23.23 22.28 22.92 21.52 18.59 23.59 15.04 15.50 23.47 29.61 26.85 18.38 22.90 25.56 17.79
73.66 75.36 75.37 75.37 73.83 72.53 67.93 72.18 61.25 63.46 44.35 53.93 50.33 47.46 31.79 53.49
13.84 19.84 11.41 11.41 12.15 9.02 10.63 11.34 18.32 23.52 21.41 25.67 19.78 13.23 20.23 15.97
1.24,df = 29, p = 0.224); mental health (t = 1.08,df = 29, p = 0.286); and worry about seizures (t = 3.78,df = 29, p = 0.198) (Tables 2 and 3). 4. Discussion and conclusions In general, psychological and social care for patients with epilepsy have been advocated in reference books on epilepsy, and a major part of the comprehensive care for patients with chronic diseases is to increase their knowledge about the disease [21,22]. The improvement of the health-related quality of life of patients with epilepsy is known as an essential component of epilepsy treatment [23]. Training programs for patients and parents (caregivers) of children with epilepsy are especially important in their comprehensive management [24]. In this respect, this study was conducted to determine the effect of a selfmanagement training program on quality of life in patients with epilepsy. The results of this study showed that the two groups were matched before the intervention in terms of demographics, disease symptoms, and quality of life and its dimensions. After the intervention, quality of life and its dimensions in the case group improved significantly, and the difference between case and control groups was statistically significant. The results of the cross-sectional study performed by Darabi et al. conformed to those of the control group and the case group before the intervention in the present study [25]. Moreover, the total score of the inventory (QOLIE-31-P) in the study conducted by Wiebe et al. did not differ significantly from the score of the total quality of life before the intervention in the present study [26]. The study conducted by Helde et al. showed a significant difference between the total quality of life before the intervention and that after one day of training and two years of consultation and follow-up by a nurse in the case group, while no significant change was observed in the control group [15]. In their study, significant changes in health discouragement, medication effects, and physical role limitations had occurred in the case group. They used the inventory for quality of life in epilepsy (QOLIE-89), and the presented included were general information about different dimensions of quality of life. Today, various training programs exist for patients with epilepsy. We used the selfmanagement training program developed by Aliasgharpour et al. in 2013 [20], which they showed had a significant effect on the self-management of epilepsy by those with the disease. Given that the patients with higher self-management were more successful in controlling their epileptic seizures, adhering to the medication regimen, etc. and, consequently, experienced higher quality of life, the self-management training program was used in the present study.
Paired t-test/p-value
b0.001 b0.001 b0.001 b0.001 b0.001 b0.001 b0.001 b0.001 0.189 0.759 0.563 0.333 0.224 0.286 0.198 0.620
The study conducted by Javaheri et al. in Iran showed that cognitive– behavioral stress management improved quality of life in women with temporal lobe epilepsy. Given that psychological considerations could significantly increase quality of life in patients with epilepsy through improving patients' physical, mental, and social conditions, a part of the training program in the present study was about lifestyle self-management, including stress management. Moreover, the selfmanagement training program also paid attention to other dimensions of epilepsy [27]. The study performed by Lua and Neni revealed that continuous receipt of information about epilepsy through short messages (SMS) could have positive effects on quality of life in patients with epilepsy [28]. In their study, both the case and control groups received information about epilepsy; the control and the case group received the instructions through a typed pamphlet and SMS, respectively. They reported positive changes in dimensions, including worry about seizures, overall quality of life, mental health, and social functioning, and in the total quality of life. However, they did not report any comparison between the status of each group before and after the intervention. Patients with epilepsy, especially in Asian countries, are stigmatized and exposed to negative behaviors and attitudes, which impact on the patients’ economic condition, educational level, and employment opportunities [29,30]. In this respect, group and individual training can increase patients' contribution, self-esteem, and learning rate and reduce the social stigma. Considering that group training was similar to the problem-based learning method commonly used in medical education and that studies on problem-based learning recommended 5–8 people for each group for an effective educational experience [10], the present study assigned 6 patients to each group. Epilepsy is a condition more complex than just the seizures, because it causes major disabilities, social isolation, and social stigma. Patients with epilepsy usually face problems in education, working, driving, and social–personal relations [31]. The social stigma reduces selfesteem and the ability to cope with the disease as 75% of patients with epilepsy have difficulty in coping [7]. Furthermore, most of the patients with epilepsy have little information about epilepsy, its treatment, and complications although extensive information is available in this regard [28,32,33]. Interest in using self-management training for improving quality of life in patients with chronic diseases has increased. Self-management training programs can use the theoretical model of behavioral change that includes strategies for improving the relevant knowledge, skills, and self-sufficiency. The general goal is that patients with chronic diseases would be experienced in treatment and management of their disease. Studies of patients with chronic diseases, such as asthma and diabetes, showed that self-management training could improve medical outcomes [31]. In this respect, training patients and their families about
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epilepsy plays an important role in coping with the disease and increases patients' self-confidence and self-management skills that make patients aware of their needs and to access specific resources to these needs. Self-management training programs are recommended to be implemented immediately after the diagnosis of epilepsy. The reason is that study results revealed that patients had a positive overview of training programs, but they were most satisfied when the programs had been implemented within a short time after the onset of epilepsy as the earlier start of programs had maximum effect on patients' quality of life [15,34]. Training should be adjusted to the learners' specifications (age, sex, educational level, culture, place of residence, access to services, etc.). Moreover, group and individual training enhances selfmanagement skills in patients with epilepsy. 4.1. Ethical consideration This study was approved by the ethical committee affiliated with Zanjan University of Medical Sciences. The objective and method of the study were explained to the participants. The participants were informed that participation in the study was voluntary and they could withdraw from the study at any moment without any penalty. In addition, the participants were asked to sign the written consent form for participating in the study and recording their voices. Moreover, they were ensured that their information and audio files would be kept confidential. Acknowledgments The researchers hereby appreciate the Research Deputy of Zanjan University of Medical Sciences, the management and nurses of Valiasr Hospital in Zanjan, and also all the patients participating in this study. Conflict of interest The authors declare that there are no conflicts of interest related to this study. References [1] Liou HH, Chen RC, Chen CC, Chiu MJ, Chang YY, Wang JD. Health related quality of life in adult patients with epilepsy compared with a general reference population in Taiwan. Epilepsy Res 2005;64:151–9. [2] Giray S, Ozenli Y, Ozisik H, Karaca S, Aslaner U. Health-related quality of life of patients with epilepsy in Turkey. J Clin Neurosci 2009;16:1582–7. [3] Au A, Li P, Chan J, Lui C, Ng P, Kwok A, et al. Predicting the quality of life in Hong Kong Chinese adults with epilepsy. Epilepsy Behav 2002;3(4):350–7. [4] Ding D, Hong Z, Chen G, Dai X, Wu J, Wang W, et al. Primary care treatment of epilepsy with phenobarbital in rural China:cost–outcome analysis from the WHO/ ILAE/IBE Global Campaign Against Epilepsy demonstration project. Epilepsia 2008; 49:535–9. [5] Yam WK, Chow SM, Ronen GM. Chinese version of the Parent-proxy Health-related Quality of Life Measure for Children with Epilepsy: translation, cross-cultural adaptation, and reliability studies. Epilepsy Behav 2005;7:697–707. [6] Ma KH, Yam KL, Tsui KW, Yao FT. Internal consistency and test–retest reliability of the Chinese version of the self-report health-related quality of life measure for children and adolescents with epilepsy. Epilepsy Behav 2006;9:51–7. [7] Baker GA, Jacoby A, Gorry J, Doughty J, Ellina V. Quality of life of people with epilepsy in Iran, the Gulf and near East. Epilepsia 2005;46:132–40. [8] Stavem K, Loge JH, Kaasa S. Health status of people with epilepsy compared with a general reference population. Epilepsia 2000;41:85–90.
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The effect of self-management training on health-related quality of life in patients with epilepsy Mohammad Ali Yadegary a,⁎, Farhad Golipour Maemodan b,1, Nahid Dehghan Nayeri c,2, Azam Ghanjekhanlo d,3 a
School of Nursing and Midwifery, Tehran University of Medical Sciences, Tehran, Iran Zanjan University Medical Sciences, Valiasr Hospital, Neurology Department, Zanjan, Iran Tehran University of Medical Sciences, Nursing Management Department, Nursing and Midwifery Care Research Center, Tehran, Iran d Zanjan University Medical Sciences, Emam Hossein, Zanjan,Iran b c
a r t i c l e
i n f o
Article history: Received 11 November 2014 Revised 24 February 2015 Accepted 21 April 2015 Available online xxxx Keywords: Self-management training Patients with epilepsy Health-related quality of life
a b s t r a c t Purpose: Epilepsy is the most common chronic neurological disease after headache. Health-related quality of life in patients with epilepsy is disturbed by psychosocial factors, seizures, and treatment side effects. This study was conducted to determine the effect of a self-management training program on quality of life in patients with epilepsy. Methods: In this controlled clinical trial, 60 patients with epilepsy going to Zanjan Neurology Clinic were examined. The samples were selected using convenience sampling and divided randomly into the case group (30 people) and control group (30 people) using the table of random numbers. Four training sessions on the nature of epilepsy and self-managementwere run for the case group. All the patients completed an inventory for quality of life twice: before and one month after the intervention. The data were analyzed using the chisquare test, independent t-test, and paired t-test. Results: There was no statistically significant difference between the two groups before the intervention in terms of personal specifications and scores and dimensions of the quality of life. One month after the intervention, a statistically significant difference was observed between the two groups in terms of the scores and dimensions of quality of life that indicated improved quality of life in the case group (P b 0.001). Conclusion: The self-management training program improved the quality of life in patients with epilepsy. The present findings highlight that psychosocial variables can have incremental significance over biomedical variables in the health-related quality of life of patients with epilepsy. © 2015 The Authors. Published by Elsevier Inc. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
1. Introduction Epilepsy is a chronic neurological disease characterized by frequent seizures that vary in terms of frequency, severity, and prognosis [1]. It is the most common chronic neurological disease after headache, and 2–5% of people experience an epileptic seizure in their lifetime. The prevalence rate of epilepsy is 0.1–0.4%, and it is higher in developing countries than developed countries [2]. Epilepsy is not only a medical condition but also a social problem, and previous studies on quality of life in patients with epilepsy showed that patients were influenced by social and cultural negative effects, as well as frequent seizures [3–6].
⁎ Corresponding author. Tel.: +98 9125422497. E-mail addresses: [email protected] (M.A. Yadegary), [email protected] (F.G. Maemodan), [email protected] (N.D. Nayeri), [email protected] (A. Ghanjekhanlo). 1 Tel.:+98 9121415193. 2 Tel.:+98 9124069465. 3 Tel.:+98 9125425168.
The traditional treatment of epilepsy often emphasizes the medical aspects of epilepsy and control of seizures through medication therapy and pays little attention to the effects of epilepsy on patients' daily life, such as patients' perception of the disorder, coping with the disease and its treatment, and ability to treat complications of epilepsy, although the psychosocial problems of epilepsy may be more disruptive than its physical symptoms for patients [3]. Epilepsy influences many dimensions of quality of life [7,8]. Studies showed that patients with epilepsy experienced lower quality of life than normal people [9,10], and quality of life in patients with epilepsy was even lower than that in patients with other chronic diseases [11]. Epilepsy presents an identity of exclusion, which, at multiple levels, hinders the ability to engage with one's community [12]. The important factors influencing the quality of life of patients with epilepsy include behavioral, mental, and cognitive conditions; the ability to work; social functioning; family stability; self-esteem; social stigma; and coping with the disease. Even if seizures are controlled, psychosocial problems and the effects of antiepileptic drugs largely affect patients' quality of life [13]. While is a correlation between a patient’s knowledge about
http://dx.doi.org/10.1016/j.yebeh.2015.04.051 1525-5050/© 2015 The Authors. Published by Elsevier Inc. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
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epilepsy and their ability to cope with the disease; studies suggest that patient knowledge about epilepsy is generally limited [14]. Numerous training programs have been developed for providing comprehensive care to patients with epilepsy [15]. Several training programs have been developed for patients with epilepsy in Iran, and studies showed their effectiveness on self-management and patients' satisfaction but not on their quality of life. Furthermore, conventional studies on pathogenicity, mortality, and life expectancy are not sufficient for health assessments any longer, and consequently, quality of life has received more attention in recent assessments of health-care services. Today, the improvement of the quality of life of patients with chronic epilepsy is facilitated by specific questionnaires that have been developed for evaluating their quality of life [16,17]. Many of those questionnaires have been translated into Persian. However, most of the studies on quality of life were performed in western countries, and the information about quality of life in eastern and developing countries is limited to descriptive studies. A study conducted in Taiwan reported low quality of life in patients with epilepsy in some dimensions including physical and psychosocial dimensions, independence, and social relations [1]. Moreover, an extensive study performed in Iran and Persian Gulf countries (Bahrain, Kuwait, Oman, Qatar, Cyprus, Jordan, Lebanon, Syria, and the United Arabic Emirates) revealed that patients with epilepsy had low quality of life in dimensions such as physical and social dimensions and energy [7]. Given that previous studies showed low quality of life in patients with epilepsy and few studies were performed to improve quality of life, the researchers conducted this study to determine the effect of a self-management training program on quality of life in patients with epilepsy. 2. Methods In this controlled clinical trial conducted in a teaching hospital in Zanjan, Iran, 60 patients with epilepsy were selected using simple random sampling and divided randomly into the case group (30 people) and the control group (30 people) using the table of random numbers. We calculated the sample size based on the study conducted by Pramuka et al. [18] on patients with epilepsy and using α = 0.05 and power = 80%. The mean QOL of that study using QOLIE-31-P (see below) was 67.3 ± 2.6 in the case group and 65 ± 2.8 in the control group. The sample size was calculated as 30 in each group [18]. The inclusion criteria of the study were as follows: age between 18 and 65 years, suffering epilepsy for at least 1 year; using antiepileptic drugs experience of at least one seizure during the last year, ability to read and write, and willingness to participate in the study. The exclusion criteria were as follows: presence of conditions in which patients need intensive care, participation in other studies, and absence from each training session. The study setting was an educational medical center selected in order to have easy access to patients with epilepsy, abundance of samples, easy data collection, and an appropriate educational environment. The data were collected using a demographic information form and the standardized inventory for QOL in patients with epilepsy (QOLIE31-P). The inventory contains 31 items measuring 7 dimensions of QOL and one general item examining the importance of the dimensions related to the disease. The dimensions of the inventory are as follows: seizure worry, mental health, energy/fatigue, cognitive functioning, medication effects, social functioning, and the overall QOL. The score of each scale is measured according to the scoring guide of the inventory. The scores range from 0–100, with higher scores indicating higher QOL. The reliability and validity of this scale have already been evaluated in Iran, and the reliability of most of the dimensions is confirmed [19]. To respect ethics, a written permit was adopted from the translator of the inventory. The training materials consisted of two parts. The first part that was provided in the first session was about the medical aspects of epilepsy including the definition of epilepsy, description of seizures, types of seizures, observation and classification of its causes, and
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diagnosis of epilepsy. Moreover, the case group received an epilepsy instructional booklet containing the content of the training program. The second part that was provided within three sessions for promoting selfmanagement was about medication management, information management, safety management, lifestyle management, and seizure management. The materials were presented face-to-face using PowerPoint presentations. These materials were already prepared by Aliasgharpour et al., its face validity on 15 patients with epilepsy had been confirmed, and it had been examined and revised in terms of readability, fluency, and understandability. Their study showed that the training had significant effects on the self-management of patients with epilepsy [20]. The patients in the case group received both the routine care and the training intervention for improvement of self-management. To do so, they were divided into 5 groups (5–6 patients in each group) and received the training intervention within four 2-hour sessions in one month. We phoned the entire group before every session to encourage them to attend. The participants completed the inventory for QOL (QOLIE31-P) before and one month after the intervention. The control group received only the routine clinical care and was contacted only through two short phone calls during the month. The case group received the intervention. All of the participants in the two groups completed the study. The groups filled out the posttest when they referred to the center for their treatment. 2.1. Data analysis procedures The main variables of this study were the independent variable of selfmanagement training and dependent variable of quality of life. To obtain the objectives, the data were analyzed with descriptive statistics, and comparison of variables and finding their correlations were done using inferential statistics. Therefore, the chi-square test was used to compare the two groups in terms of the demographic characteristics, the paired t-test was used to measure quality of life in each group (before and after the intervention), and the independent t-test was used to compare the quality of life of the two groups at the same time. The statistical analysis of the data was performed using the SPSS16 software. 3. Results The 60 patients with epilepsy were randomly divided into the case group (30 patients) and control group (30 patients). The results showed that of the participants, 61.7% were 18–25 years old, 51.7% were male, 61.7% were single, 41.7% were working, and 55% did not have a high school diploma. Moreover, of the participants, 95% had generalized seizures, 58.3% experienced seizures during the last month, 45% experienced one seizure during the last year, and 71.7% used one drug to control seizures. The patients in the two groups did not have any significant differences in terms of all demographic specifications and disease symptoms (Table 1). The results of the independent t-test before the intervention did not show any significant difference in the case and control groups for the total quality of life (t = 0.772,df = 58, p = 0.444) and dimensions of quality of life: overall quality of life (t = 0.679,df = 58, p = 0.500); social functioning (t = 1.23,df = 58, p = 0.221); medication effects (t = 0.424,df = 58, p = 0.673); cognitive functioning (t = 0.185,df = 58, p = 0.854); energy/fatigue (t = 1.258,df = 58, p = 0.214); mental health (t = 0.644,df = 58, p = 0.522); and worry about seizures (t = 0.343,df = 58, p = 0.733). In other words, the two groups were matched in terms of the total quality of life and its dimensions. However, the results of the independent t-test after the intervention revealed a significant difference in the case and control groups for the total quality of life (t = 5.22,df = 58, p b 0.001) and dimensions of quality of life: overall quality of life (t = 5.47,df = 58, p = 0.004); social functioning (t = 2.11,df = 58, p = 0.039); medication effects (t = 7.004,df = 58, p b 0.001); cognitive functioning (t = 2.54,df = 58, p = 0.014); energy/fatigue (t = 5.54,df = 58,
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Table 1 Frequency distribution of demographic characteristics and disease symptoms of the patients with epilepsy in the case and control groups. Demographic characteristics
Group
Result
Case group
Age
18–25 years 26–35 years 36–45 years 46–65 years Female Male Married Single Other Employed Unemployed Housewife Reading and writing Less than high school High school diploma University degree Good Moderate Bad Under 12 years 13–22 years 23–32 years Over 33 years Partial Generalized 1–2 times a month 3–5 times a month Over 5 times a month Once a year 2 times a year Last 1 month Last 1–6 months Last 6–12 months One More than one
Sex Marital status
Employment status
Education
Economic condition
Age at seizure onset
Type of seizure Number of seizures
Time of the last seizure
Number of medications
Control group
Number
Percentage
Number
Percentage
9 12 7 2 14 16 10 16 4 13 9 8 6 11 9 4 5 18 7 8 16 4 2 2 28 5 2 0 13 10 17 4 9 20 10
30.00 40.00 23.30 6.70 46.70 53.30 33.30 53.40 13.30 43.30 30.00 26.70 20.00 36.70 30.00 13.30 16.70 60.00 23.30 26.70 53.30 13.30 6.70 6.70 93.30 16.70 6.70 0 43.30 33.30 56.70 13.30 30.00 99.70 33.30
12 8 5 5 15 15 12 16 2 11 15 4 8 10 6 6 10 16 4 6 18 4 2 1 29 4 0 2 14 10 17 6 7 23 7
40.00 26.60 16.70 17.70 50.00 50.00 40.00 53.40 6.70 36.70 50.00 13.30 26.70 33.30 20.00 20.00 33.30 53.30 13.30 20.00 60.00 13.30 6.70 3.30 96.70 13.30 0 6.70 46.70 33.30 56.70 20.00 23.30 76.70 23.30
p b 0.001); mental health (t = 8.57,df = 58, p b 0.001); and worry about seizures (t = 8.65,df = 58, p b 0.001). Moreover, the paired t-test before and after the intervention in the case group showed a significant difference between the total quality of life (t = 8.60,df = 29, p b 0.001) and dimensions of quality of life: overall quality of life (t = 6.61,df = 29, p b 0.001); social functioning (t = 4.14,df = 29, p b 0.001); medication effects (t = 7.71,df = 29, p b 0.001); cognitive functioning (t = 3.79,df = 29, p b 0.001); energy/fatigue (t = 7.50,df = 29, p b 0.001);
t-test t = 0.210 df = 58 p = 0.834 Fisher's exact test p = 0.703 Fisher's exact test p = 0.703 Fisher's exact test p = 0.21 χ2 = 1.33 df = 3 p = 0.721 χ2 = 2.60 df = 2 p = 0.272 t = 1.23 df = 58 p = 0.162 Fisher's exact test p=1 Fisher's exact test p = 0.536
Fisher's exact test p = 0.728 Fisher's exact test p = 0.567
mental health (t = 7.91,df = 29, p b 0.001); and worry about seizures (t = 11.20,df = 29, p b 0.001). However, the paired t-test before and after the intervention in the control group did not show any significant difference between the total quality of life (t = 0.501,df = 29, p = 0.620) and dimensions of quality of life: overall quality of life (t = 1.34,df = 29, p = 0.189); social functioning (t = 0.310,df = 29, p = 0.759); medication effects (t = 0.585,df = 29, p = 0.563); cognitive functioning (t = 0.984,df = 29, p = 0.333); energy/fatigue (t =
Table 2 Comparison of the mean and standard deviation of the scores of quality of life and its dimensions in patients with epilepsy in the case and control groups before and after the intervention. Quality of life and its dimensions
Before the intervention
After the intervention
Overall quality of life Social functioning Medication effects Cognitive functioning Energy–fatigue Mental health Worry about seizure Total quality of life Overall quality of life Social functioning Medication effects Cognitive functioning Energy–fatigue Mental health Worry about seizure Total quality of life
Case group
Control group
Independent t-test/p-value
Mean
Standard deviation
Mean
Standard deviation
53.41 54.77 44.62 50.38 47.66 48.13 22.60 48.67 73.66 75.36 75.37 68.92 73.83 72.53 67.93 72.18
22.77 23.23 22.28 22.92 21.52 18.59 23.59 15.04 13.84 19.84 11.41 19.61 12.15 9.02 10.63 11.34
56.83 62.23 47.49 49.19 54.16 51.60 24.78 51.85 61.25 63.46 44.35 53.93 50.33 47.46 31.79 53.49
15.50 23.47 29.61 26.85 18.38 22.90 25.56 17.79 18.32 23.52 21.41 25.67 19.78 13.23 20.23 15.97
0.500 0.221 0.673 0.854 0.214 0.522 0.733 0.444 0.004 0.039 b0.001 0.014 b0.001 b0.001 b0.001 b0.001
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Table 3 Comparison of the mean and standard deviation of the scores of quality of life and its dimensions in patients with epilepsy in the case and control groups before and after the intervention. Quality of life and its dimensions
Case group
Control group
Overall quality of life Social functioning Medication effects Cognitive functioning Energy–fatigue Mental health Worry about seizure Total quality of life Overall quality of life Social functioning Medication effects Cognitive functioning Energy–fatigue Mental health Worry about seizure Total quality of life
Before intervention
After intervention
Mean
Standard deviation
Mean
Standard deviation
53.41 54.77 44.62 50.38 47.66 48.13 22.60 48.67 56.83 62.23 47.49 49.19 54.16 51.60 24.78 51.95
22.77 23.23 22.28 22.92 21.52 18.59 23.59 15.04 15.50 23.47 29.61 26.85 18.38 22.90 25.56 17.79
73.66 75.36 75.37 75.37 73.83 72.53 67.93 72.18 61.25 63.46 44.35 53.93 50.33 47.46 31.79 53.49
13.84 19.84 11.41 11.41 12.15 9.02 10.63 11.34 18.32 23.52 21.41 25.67 19.78 13.23 20.23 15.97
1.24,df = 29, p = 0.224); mental health (t = 1.08,df = 29, p = 0.286); and worry about seizures (t = 3.78,df = 29, p = 0.198) (Tables 2 and 3). 4. Discussion and conclusions In general, psychological and social care for patients with epilepsy have been advocated in reference books on epilepsy, and a major part of the comprehensive care for patients with chronic diseases is to increase their knowledge about the disease [21,22]. The improvement of the health-related quality of life of patients with epilepsy is known as an essential component of epilepsy treatment [23]. Training programs for patients and parents (caregivers) of children with epilepsy are especially important in their comprehensive management [24]. In this respect, this study was conducted to determine the effect of a selfmanagement training program on quality of life in patients with epilepsy. The results of this study showed that the two groups were matched before the intervention in terms of demographics, disease symptoms, and quality of life and its dimensions. After the intervention, quality of life and its dimensions in the case group improved significantly, and the difference between case and control groups was statistically significant. The results of the cross-sectional study performed by Darabi et al. conformed to those of the control group and the case group before the intervention in the present study [25]. Moreover, the total score of the inventory (QOLIE-31-P) in the study conducted by Wiebe et al. did not differ significantly from the score of the total quality of life before the intervention in the present study [26]. The study conducted by Helde et al. showed a significant difference between the total quality of life before the intervention and that after one day of training and two years of consultation and follow-up by a nurse in the case group, while no significant change was observed in the control group [15]. In their study, significant changes in health discouragement, medication effects, and physical role limitations had occurred in the case group. They used the inventory for quality of life in epilepsy (QOLIE-89), and the presented included were general information about different dimensions of quality of life. Today, various training programs exist for patients with epilepsy. We used the selfmanagement training program developed by Aliasgharpour et al. in 2013 [20], which they showed had a significant effect on the self-management of epilepsy by those with the disease. Given that the patients with higher self-management were more successful in controlling their epileptic seizures, adhering to the medication regimen, etc. and, consequently, experienced higher quality of life, the self-management training program was used in the present study.
Paired t-test/p-value
b0.001 b0.001 b0.001 b0.001 b0.001 b0.001 b0.001 b0.001 0.189 0.759 0.563 0.333 0.224 0.286 0.198 0.620
The study conducted by Javaheri et al. in Iran showed that cognitive– behavioral stress management improved quality of life in women with temporal lobe epilepsy. Given that psychological considerations could significantly increase quality of life in patients with epilepsy through improving patients' physical, mental, and social conditions, a part of the training program in the present study was about lifestyle self-management, including stress management. Moreover, the selfmanagement training program also paid attention to other dimensions of epilepsy [27]. The study performed by Lua and Neni revealed that continuous receipt of information about epilepsy through short messages (SMS) could have positive effects on quality of life in patients with epilepsy [28]. In their study, both the case and control groups received information about epilepsy; the control and the case group received the instructions through a typed pamphlet and SMS, respectively. They reported positive changes in dimensions, including worry about seizures, overall quality of life, mental health, and social functioning, and in the total quality of life. However, they did not report any comparison between the status of each group before and after the intervention. Patients with epilepsy, especially in Asian countries, are stigmatized and exposed to negative behaviors and attitudes, which impact on the patients’ economic condition, educational level, and employment opportunities [29,30]. In this respect, group and individual training can increase patients' contribution, self-esteem, and learning rate and reduce the social stigma. Considering that group training was similar to the problem-based learning method commonly used in medical education and that studies on problem-based learning recommended 5–8 people for each group for an effective educational experience [10], the present study assigned 6 patients to each group. Epilepsy is a condition more complex than just the seizures, because it causes major disabilities, social isolation, and social stigma. Patients with epilepsy usually face problems in education, working, driving, and social–personal relations [31]. The social stigma reduces selfesteem and the ability to cope with the disease as 75% of patients with epilepsy have difficulty in coping [7]. Furthermore, most of the patients with epilepsy have little information about epilepsy, its treatment, and complications although extensive information is available in this regard [28,32,33]. Interest in using self-management training for improving quality of life in patients with chronic diseases has increased. Self-management training programs can use the theoretical model of behavioral change that includes strategies for improving the relevant knowledge, skills, and self-sufficiency. The general goal is that patients with chronic diseases would be experienced in treatment and management of their disease. Studies of patients with chronic diseases, such as asthma and diabetes, showed that self-management training could improve medical outcomes [31]. In this respect, training patients and their families about
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epilepsy plays an important role in coping with the disease and increases patients' self-confidence and self-management skills that make patients aware of their needs and to access specific resources to these needs. Self-management training programs are recommended to be implemented immediately after the diagnosis of epilepsy. The reason is that study results revealed that patients had a positive overview of training programs, but they were most satisfied when the programs had been implemented within a short time after the onset of epilepsy as the earlier start of programs had maximum effect on patients' quality of life [15,34]. Training should be adjusted to the learners' specifications (age, sex, educational level, culture, place of residence, access to services, etc.). Moreover, group and individual training enhances selfmanagement skills in patients with epilepsy. 4.1. Ethical consideration This study was approved by the ethical committee affiliated with Zanjan University of Medical Sciences. The objective and method of the study were explained to the participants. The participants were informed that participation in the study was voluntary and they could withdraw from the study at any moment without any penalty. In addition, the participants were asked to sign the written consent form for participating in the study and recording their voices. Moreover, they were ensured that their information and audio files would be kept confidential. Acknowledgments The researchers hereby appreciate the Research Deputy of Zanjan University of Medical Sciences, the management and nurses of Valiasr Hospital in Zanjan, and also all the patients participating in this study. Conflict of interest The authors declare that there are no conflicts of interest related to this study. References [1] Liou HH, Chen RC, Chen CC, Chiu MJ, Chang YY, Wang JD. Health related quality of life in adult patients with epilepsy compared with a general reference population in Taiwan. Epilepsy Res 2005;64:151–9. [2] Giray S, Ozenli Y, Ozisik H, Karaca S, Aslaner U. Health-related quality of life of patients with epilepsy in Turkey. J Clin Neurosci 2009;16:1582–7. [3] Au A, Li P, Chan J, Lui C, Ng P, Kwok A, et al. Predicting the quality of life in Hong Kong Chinese adults with epilepsy. Epilepsy Behav 2002;3(4):350–7. [4] Ding D, Hong Z, Chen G, Dai X, Wu J, Wang W, et al. Primary care treatment of epilepsy with phenobarbital in rural China:cost–outcome analysis from the WHO/ ILAE/IBE Global Campaign Against Epilepsy demonstration project. Epilepsia 2008; 49:535–9. [5] Yam WK, Chow SM, Ronen GM. Chinese version of the Parent-proxy Health-related Quality of Life Measure for Children with Epilepsy: translation, cross-cultural adaptation, and reliability studies. Epilepsy Behav 2005;7:697–707. [6] Ma KH, Yam KL, Tsui KW, Yao FT. Internal consistency and test–retest reliability of the Chinese version of the self-report health-related quality of life measure for children and adolescents with epilepsy. Epilepsy Behav 2006;9:51–7. [7] Baker GA, Jacoby A, Gorry J, Doughty J, Ellina V. Quality of life of people with epilepsy in Iran, the Gulf and near East. Epilepsia 2005;46:132–40. [8] Stavem K, Loge JH, Kaasa S. Health status of people with epilepsy compared with a general reference population. Epilepsia 2000;41:85–90.
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