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Do people with epilepsy have a different lifestyle?
Epilepsy & Behavior 74 (2017) 27–32
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Do people with epilepsy have a different lifestyle? Clara Aguirre a,⁎, Sonia Quintas a, Ana María Ruiz-Tornero a, Guadalupe Alemán b, Ana Betariz Gago-Veiga a, María de Toledo a, Jose Vivancos a a b
Epilepsy Unit, Neurology Department, Institute for Health Research, Hospital Universitario de La Princesa, Madrid, Spain Preventative Medicine Department, Hospital Universitario de La Princesa, Madrid, Spain
a r t i c l e
i n f o
Article history: Received 2 April 2017 Revised 3 June 2017 Accepted 5 June 2017 Available online xxxx Keywords: Epilepsy Toxic habits Antidepressants Lifestyle Body mass index
a b s t r a c t Background: Epilepsy is one of the most common neurological diseases. Its high prevalence, economic relevance and impact on daily life make it crucial that we study this condition in further detail. Our study seeks to investigate whether the lifestyle of people diagnosed with epilepsy is different to that of people without epilepsy, in order to better understand our patients. Methods: We designed and delivered a questionnaire about quality of life and daily habits to patients from our hospital's Epilepsy Unit. We also delivered the questionnaire to a control group with similar demographic characteristics. Lifestyle differences between patients and control group members were analyzed. Patients were further divided according to the type of epilepsy, time since diagnosis, seizure frequency and pharmacotherapy. Results: A total of 278 people were interviewed (85 patients, 193 controls). There was no difference in educational level, marital status and healthy habits (sports, reading and diet) between the groups. However, patients with epilepsy were more often unemployed (p b 0.05) and had a healthier lifestyle (lower body mass index, lower alcohol consumption and a tendency towards smoking less). Anxiolytic-antidepressant intake was higher in patients with epilepsy. In terms of the type of epilepsy, patients with focal epilepsy exercised more than those with generalized epilepsy; no other statistically significant differences were found between the individuals studied. Discussion: Epilepsy diagnosis does not seem to negatively alter the daily life of patients; in fact, many adopt a healthier lifestyle after diagnosis. The risk of antidepressant/anxiolytic intake is, however, higher, which could reflect the impact this chronic condition still has at a social level. © 2017 Elsevier Inc. All rights reserved.
1. Introduction Since 2005 and according to the ILAE [1], epilepsy has been considered “a disorder of the brain characterized by an enduring predisposition to generate epileptic seizures, and by the neurobiological, cognitive, psychological, and social consequences of this condition”. Unfortunately, despite medical progress in terms of pharmacology and health education, epilepsy diagnosis may still have a social impact and some patients might, therefore, be discriminated against. Previous studies have focused mainly on toxic habits or quality of life of patients with epilepsy. In this sense, polytherapy, frequency of seizures, drug side effects, sex, marital status and education have been described as negative factors associated with health-related quality of life [2,3]. In another study conducted in Ohio [4], the authors showed that the rate of cigarette smoking doubled in people with epilepsy compared to the population without epilepsy. Recently, the ILAE Task Force on Sports and Epilepsy has described how seizure control might be favorably affected by physical exercise, producing health and psychosocial benefits [5]. The current study ⁎ Corresponding author. E-mail address: [email protected] (C. Aguirre).
http://dx.doi.org/10.1016/j.yebeh.2017.06.006 1525-5050/© 2017 Elsevier Inc. All rights reserved.
seeks to investigate whether the overall lifestyle (including healthy and toxic habits) of people diagnosed with epilepsy differs from that of people without epilepsy in our health area. This area (mainly Salamanca district in Madrid) is known to be the second district with the highest income per capita in Madrid (22.255 euros/habitant) and also for its low unemployment rate (below 10%), according to the Instituto de Estadística de la Comunidad de Madrid (http://www. madrid.org/iestadis/).
2. Resources and methods 2.1. Study design This is a case control, descriptive and observational study. The main objective of the study was to investigate the lifestyle of patients with epilepsy under treatment in the Epilepsy Unit at the Hospital Universitario de La Princesa, Madrid. In the first phase, after reviewing the literature on the topic, a questionnaire was carefully designed (Fig. 1) to assess the main lifestyle characteristics of people with epilepsy. We also aimed to study if our patients thought the disease might have changed these lifestyle somehow..
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Fig. 1. Questionnaire designed to assess the main lifestyle characteristics.
In the second phase, this questionnaire was delivered to 85 patients with epilepsy; controls were chosen randomly from a healthy population within the same urban area. In addition, these controls had to meet the following requirements: similar sex distribution, age and demographic characteristics as patients studied. The total number of
individuals interviewed was 278 (85 patients and 193 controls). This second phase took place between October 2013 and March 2014. Inclusion criteria were established: over 18 years old who agreed to take part in the study, regardless sex, marital status, nationality, educational level or epilepsy characteristics. Exclusion criteria were: mental
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deficiency, epilepsy surgery and limiting comorbidities. The questionnaire was answered anonymously. With a total of 13 questions (Fig. 1), we obtained the following dependent variables: sex (female, male), age, BMI based on self-reported biometric features (underweight, normal weight, overweight, obese), educational level (low, medium, high), employment status (employed, unemployed, retired, disabled), marital status (single, married, divorced, widower, other), living alone (yes, no), smoking (smoker, non-smoker, former smoker), alcohol intake (daily, at the weekend, sporadic, never, stopped after diagnosis), sport (yes, no), reading (yes, no), healthy diet (yes, no), anxiolytic/antidepressant drugs (yes, no). Patients with epilepsy were also asked to answer six more questions regarding influence of the diagnosis on their lifestyle: relationship between beginning/stopping smoking with the diagnosis (yes, no), relationship between smoking and different antiepileptic drugs (yes, no), influence of epilepsy on leisure activities (yes, no) and how this relationship has been (more fear, more limitations, more often, other), relationship between seizures and sport (more frequent, not related), and relationship between diagnosis and reading habit (more/less frequent, not reading at all). Data about the type of epilepsy was recorded retrospectively from medical records. The study passed the ethics committee approval.
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Table 1 Case and controls baseline characteristics.
Sex (number of men/% of men) Age (medium age in each group, in years) Educational level Low Medium High Work situation Active Unemployed Retired Disability Other Marital status Single Married Divorced Widowed Other Live alone (N/%) BMI Underweight Normal weight Overweight Obesity
Patients with epilepsy (N = 85)
Controls (N = 193)
39 (45,9%) 43,7 20 (23.8%) 28 (32.5%) 37 (43.8%) 32 (37.2%)* 26 (30.8%)* 16 (19.2%) 11 (12.8%)* 0* 44 (51.2%) 33 (39.3%) 5 (6%) 2 (2.4%) 1 (1.2%) 10 (11.9%) 2 (2.7%) 54 (63.5%)* 21 (24.3%) 8 (9.5%)
89 (46,1%) 46,1 37 (19.4%) 74 (38.3%) 82 (42.2%) 129 (66.7%)* 29 (14.8%)* 27 (14.2%) 1 (0.5%)* 7 (3.8%)* 80 (11.7%) 91 (46.9%) 12 (6.3%) 10 (5.2%) 0 35 (17.9%) 6 (3.2%) 95 (49.5%)* 64 (33%) 28 (14.4%)
Entries rendered in bold and marked with * are in those we found significant difference.
2.2. Statistical analysis Qualitative variables are presented in absolute and relative frequencies. Quantitative variables are expressed in mean and standard deviation, when normal distribution applies; or median and interquartile (p25-75) if the variable followed an asymmetric distribution. In order to evaluate factors that might be related, univariate analysis was initially performed by chi-square, Fisher's exact test and ANOVA. A multivariate model was adjusted from logistic regression to study factors that were independently associated with overall satisfaction. The factors included in the multivariate model were those significant in univariate analysis and/or clinically outstanding. A significance level of 5% (p b 0.05) was set for all comparisons. Data was processed and analyzed with SPSS v19.0 for Window. 3. Results 3.1. Differences between patients and controls 85 patients with epilepsy and 193 controls were interviewed. Controls were also obtained from our health area and had a similar distribution of demographic characteristics. The average age of the patients was 43.7 years. The controls were 46.1 years old on average. 45.9% of patients were male (N = 39). 46.1% of the controls represented the male sex (N = 89). Among patients with epilepsy, 52.94% (45) have focal epilepsy and 47.06% (40) a generalized form. When it comes to time since diagnosis, 60% (51) were diagnosed more than 10 years ago, 36.47% (31) between 1 and 10 years ago and just 3 patients (3.53%) were diagnosed less than one year before the study was performed. Most of our patients were receiving more than one treatment (63.53%) at the time the survey was performed. Nevertheless, the majority had well-controlled epilepsy: 36.9% of patients had not had a seizure in the last year, 38.1% had had less than one seizure per month, 15.48% had between 1 and 10 seizures every month and just 9.52% had daily seizures. We did not find any statistically significant difference between the educational level of patients and controls. We did, however, find that patients with epilepsy in our group were more often unemployed than controls (p b 0.05). There were no statistically significant differences between the marital status or cohabitation status (alone or accompanied) of the two groups. Although both patients and controls claimed to have a balanced diet, there was a difference (p b 0.05) in body mass index (BMI): patients
tended to be at their normal weight more often than controls. Results are shown in Table 1. Regarding toxic habits (smoking and alcohol consumption), there was no difference in smoking between the two groups, although 15.4% of patients claimed they had stopped smoking tobacco after being diagnosed with epilepsy, whereas 4.5% had started smoking after diagnosis. We found drinking alcohol frequently or sporadically was more common in people without epilepsy (p b 0.05). 10% of patients had stopped consuming alcohol after diagnosis. Regarding what we called “healthy habits” (sports, reading, diet), we did not find any significant difference between patients and people without epilepsy. 8.8% of patients did, however, say they had found a relationship between practicing sports and having seizures, 33.3% of them said they were afraid of leisure activities and 50% of them found a restriction in their ability to take part in them. 29.6% of our patients were under antidepressant or anxiolytic treatment compared to 11.6% of controls (p b 0.05). In the multivariate logistic regression, we found that the risk of antidepressant/anxiolytic intake is 3.59 times higher in patients with epilepsy (IC 95: 1.73–7.44). We also found that the association between epilepsy and living alone was 0.34 (IC: 95: 0.13–0.89). None of the other variables measured were significant in the results of the multivariate logistic regression. Table 2 shows the results regarding healthy and toxic habits. Results marked with * were found to be different between the two groups with statistical significance (p b 0.05).
Table 2 Toxic and healthy habits.
Smoking
Alcohol drinking
Sports regularly Reading regularly Healthy diet
Smoker Never smoked Former smoker Frequently Sporadically Never Quitted after diagnosis
Patients with epilepsy (N = 85)
Controls (N = 193)
17 (20%) 51 (60%) 17 (20%) 4 (4.9%)* 28 (33.3%) 44 (51.9%)* 9 (9.9%) 55 (64.6%) 63 (73.8%) 66 (78%)
59 (30.6%) 111 (57.5%) 23 (11.9%) 62 (32.3%)* 89 (46%) 42 (21.7%)* 0 118 (60.9%) 156 (81.1%) 144 (75.4%)
Entries rendered in bold and marked with * are in those we found significant difference.
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3.2. Results according to type of epilepsy, time since diagnosis, seizure frequency and pharmacotherapy Regarding type of epilepsy, 52.4% of our patients had focal epilepsy, while the remaining 47.6% had generalized epilepsy. Patients with focal epilepsy exercised more (78.6% vs 48.7%, p b 0.05) and showed a tendency to have a lower alcohol intake (40.9% vs 25%, ns). No significant differences were found regarding employment status (34.2% vs 41.0%), reading (81% vs 64.9%), diet (78.6% vs 76.9%), antidepressant or anxiolytic treatment (22.5% vs 35%) or smoking (13.6% vs 27.5%). 59.5% of patients had been diagnosed more than 10 years ago and 36.9% from 1 to 10 years ago. The patients diagnosed less than 10 years ago had a higher educational level (64.5% vs 28.3%, p b 0.05) and were less overweight (10.7% vs 34.1%, p b 0.05). Smoking, leisure activities, sports and alcohol intake questions were answered with no statistically significant differences between the two groups. Most patients reported they had never drunk, regardless time of evolution. Another interesting fact was that 4.3% of patients diagnosed more than 10 years ago had stopped drinking after diagnosis, compared to 12.9% diagnosed between 1 and 10 years ago. No statistically significant differences were found in any aspect when comparing patients according to frequency of seizures (daily, N1/month, b 1/month, 1 year free of seizures) or number of antiepileptic drugs (mono or polytherapy). While 8.8% of patients thought that seizure frequency increases with sport, 91.2% of patients thought that there was no link between epilepsy and sport. Among those who practiced sports often, 80.8% were having less than one seizure per month or even a year free of seizures. Table 3 shows the differences found according to type of epilepsy and time since diagnosis. Results marked with * were found to be different between the two groups with statistical significance (p b 0.05).
4. Discussion In our study, we found that patients with epilepsy are more often unemployed, despite having the same educational level, and have a higher anxiolytic-antidepressant intake than the control group. We have not found statistically significant differences in educational level, marital status and healthy habits between patients with epilepsy and the control group. Validated questionnaires found in existing literature have focused on the quality of life of patients with epilepsy, often employing a whole host of tests that also included adverse effects, seizure severity and cognitive symptomatology [6,7]. Although these tools are useful in helping our patients, administration time limits their application in normal clinical practice and they do not answer some of the more specific questions about lifestyle. Recently, in Lithuania a cross-sectional study [8] demonstrated that epilepsy seriously influences family life. In the present study, we too wanted to develop a survey to include these and other aspects of daily life, such as practicing sport, reading habits or diet. Moreover, and unlike other studies, we wanted to incorporate a control group to try to see the real impact of epilepsy diagnosis on lifestyle. There are a few studies that have analyzed data on the lifestyle of patients with epilepsy. One such example is an important epidemiologic study conducted in Spain (EPIBERIA questionnaire) and published recently [9,10], which focused on demographic and clinical characteristics. The type of epilepsy was generalized in 22.58% of patients vs 76.34% presenting focal ones. Regarding etiology, unknown led with 45.16%, followed by structural/metabolic (32.25%) and, finally, genetic (22.6%). The majority of patients were undergoing antiepileptic treatment: monotherapy (44.08%), biotherapy (37.63%) and polytherapy (17.2%). 84% were classified under active epilepsy (seizure in the last 5 years), from which 62% had had at least one seizure in the last year.
Table 3 Differences according to the type of epilepsy and the time since the diagnosis. Type of epilepsy
Sex (number of men/%) Age (medium age in each group) Educational level Low Medium High Work situation Active Unemployed Retired Disability Marital status Single Married Divorced Widowed Other Live alone (N/%) BMI Underweight Normal Overweight Obesity Smoking Smoker Never Former Alcohol drinking Frequently Sporadically Never Have quitted Sports regularly Reading regularly Healthy diet Antidepressant/anxiolytic treatment
Time since the diagnosis
Focal (N = 45)
Generalized (N = 40)
N10 years (N = 51)
1–10 years (N = 31)
b1 year (N = 3)
21 (47.7%) 44 (SD: 15) 6 (14.6%) 13 (31.7%) 22 (53.7%) 15 (34.2%) 13 (28.9%) 11(23.7%) 6 (13.2%) 23 (53.5%) 15 (34.9%) 3 (7%) 1 (2.3%) 1 (2.3%) 7 (16.3%) 2 (4.7%) 28 (62.8%) 11 (23.3%) 4 (9.3%) 6 (13.6%) 29 (63.6%) 10 (22.7%) 1 (2.3%) 18 (40.9%) 22 (47.7%) 4 (9.1%) 35 (78.6%)* 36 (81%) 35 (78.6%) 10 (22.5%)
18 (45%) 42 (SD: 16) 13 (33.3%) 13 (33.3%) 13 (33.3%) 17 (41%) 13 (33.3%) 5 (12.8%) 5 (12.8%) 20 (50%) 17 (42.5%) 2 (5%) 1 (2.5%) 0 3 (7.5%) 0 26 (64.5%) 10 (25.8%) 4 (9.7%) 11 (27.5%) 23 (57.5%) 6 (15%) 3 (8.4%) 10 (25%) 22 (55.6%) 5 (11.1%) 19 (48.7%)* 26 (64.9%) 31 (76.9%) 14 (35%)
25 (50%) 45 (SD: 13) 16 (30.4%) 21 (41.3%) 14 (28.3%)* 18 (34.8%) 19 (37%) 9 (17.4%) 5 (10.9%) 21 (42%) 25 (48%) 3 (6%) 1 (2%) 1 (2%) 6 (12.2%) 1 (2.3%) 29 (56.8%) 17 (34.1%)* 4 (6.8%) 13 (26%) 30 (58%) 8 (16%) 3 (6.5%) 20 (39.1%) 26 (50%) 2 (4.3%) 28 (55.3%) 34 (67.4%) 36 (70.8%) 14 (30.4%)
11 (35.5%) 41 (SD: 17) 4 (12.9%) 7 (22.6%) 20 (64.5%)* 12 (39.3%) 8 (25%) 5 (17.9%) 6 (17.9%) 21 (66.7%) 7 (23.3%) 2 (6.7%) 1 (3.3%) 0 4 (12.9%) 1 (3.6%) 22 (71.4%) 3 (10.7%)* 5 (14.3%) 3 (9.7%) 21 (67.7%) 7 (22.6%) 1 (3.2%) 9 (29%) 17 (54.8%) 4 (12.9%) 23 (74.2%) 25 (80%) 28 (90%) 9 (29%)
3 (100%) 49 (SD: 30) 1 (33.3%) 0 2 (66.7%) 2 (66.7%) 0 1 (33.3%) 0 2 (66.7%) 1 (33.3%) 0 0 0 0 0 3 (100%) 0 0 1 (33.3%) 1 (33.3%) 1 (33.3%) 0 0 1 (33.3%) 2 (66.7%) 3 (100%) 3 (100%) 2 (66.7%) 0
Entries rendered in bold and marked with * are in those we found significant difference.
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This study did not, however, evaluate the socio-demographic aspects of epilepsy patients' daily life in our country. We believe our research plays a crucial role in drawing a picture of this fascinating aspect. Much of the data evaluated when comparing patients with and without epilepsy showed no statistically significant difference, which we think is very important. The fact that no differences between patients with epilepsy and controls have been found could lead us to think that the social view of the disease is improving. Moreover, patients with epilepsy seem to have healthier life habits, as they exercise more, regardless of the possibility of a seizure. We have not, however, studied whether our patients have fewer comorbidities, such as vascular risk factors, stroke, etc. It would be advisable to complete this aspect of our research with a larger study evaluating different comorbidities that may affect these individuals. Some studies have already compared the lifestyle of patients with epilepsy and patients suffering from other chronic conditions. In a national population-based study conducted in Canada using the 2001–2005 Canadian Community Health Survey [11], the health status and health-related behaviors in patients with epilepsy were compared to those suffering from migraines, diabetes and to the general population (a total of 400,005 individuals were interviewed). It was found that people with epilepsy had lower quality of life, family function and social support. Those with epilepsy tended to have more disability days and limitation in activities, as well as lower annual income than other groups. They also claimed to practice less sport and the prevalence of obesity was higher in those with epilepsy than in the general population. That study also showed people with epilepsy had a higher prevalence of smoking, but lower levels of alcohol consumption. The prevalence of fruit and vegetable consumption was similar for those with and without epilepsy. Different surveys carried out in the USA [4,12,13] showed poorer physical and mental health in epilepsy patients, as well as lower educational attainment, annual income and sport practice. These previous studies also found that people with epilepsy smoke more than the population without epilepsy. We would like to emphasize the differences our study showed compared to these previous ones. Our group of patients with epilepsy has the same educational level and marital status as those interviewed without epilepsy. It is important to take into account that, due to the area covered by our hospital, the socioeconomic level of our patients is probably higher than those included in previous studies. We did find that despite a similar educational level, the rate of unemployment was higher in the epilepsy cohort. The reason is not well known, but it could be associated with what previous studies [14,15] have found regarding epilepsy impact: the possible psychologically and social noxious effects of a publically witnessed illness [16], and the sense of frustration regarding social interactions [17]. We hypothesized that medication effect (as sedation), and cumulative cognitive impairment in some cases could also be related with the difficulty finding a job our patients might have. As opposed to what other studies found [11], our patients tend to be normal weight (according to body mass index) more often than the control group. Furthermore, we find it very significant that in our group there were no differences in “healthy habits” (sports, reading, diet) between people with epilepsy and controls. In our study, patients with epilepsy tend to drink alcohol less frequently than controls. This is very similar to what it is described in previous studies, which we think is related to the advice given when diagnosed, as alcohol increases risk of seizures. We would like to highlight that 4.3% of patients diagnosed more than 10 years ago and 12.9% diagnosed between 1 and 10 years ago had stopped drinking alcohol due to their epilepsy diagnosis. This could be due to drug interactions or the possibility of increasing seizure risk. In patients diagnosed with the illness less than 10 years ago, we found educational level to be high and frequency of overweight
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individuals to be lower. Although it would be impossible to pinpoint a single cause for these facts, it may be because these patients are younger than those who were diagnosed 10 or more years ago. Many studies show a higher prevalence of psychiatric comorbidities in patients with epilepsy [11,18,19]. It has been reported that 30% of people with epilepsy unresponsive to treatment have depressive symptoms that are clinically relevant [20]. Other studies showed that 50% of these patients and 10% of patients with well-controlled epilepsy present depressive symptoms [21]. Compared to the general population, depression is 3 to 10 times more common in patients with refractory epilepsy. In our study, we found that patients with epilepsy are given antidepressant or anxiolytic treatment three times more frequently than those without epilepsy. It is worth bearing in mind that our cases came from the “Epilepsy Unit” of our hospital, which means that some of them are refractory. Our results in this area are, very similar to those found in previous studies, highlighting the importance of identifying psychiatric comorbidities in people with epilepsy. There are not many studies analyzing the influence of the type of seizures, frequency, time since diagnosis and mono/polytherapy on patient lifestyle. In our study, we conclude that these factors do not play a decisive role in patient lifestyle, except for patients without generalized seizures, who practiced more sports than patients with generalized seizures, with statistically significant difference. Seizure frequency also plays an important role; among those who practiced sports often, 80.8% were having less than one seizure per month or even a year free of seizures. This finding could be due to the huge limitation and influence on routine when generalized seizures occur. On the other hand, when having a focal seizure, patients do not lose consciousness and this type of seizure could be considered “mild”. Furthermore, patients with focal epilepsy also had no statistically significant tendency to consume more alcohol than patients with generalized epilepsy. These facts have not been identified in previous studies [3,13,22]. Finally, in contrast to previous studies [23], we found no differences in the practice of sports between those patients with worse disease control (high frequency of seizures and/or combination therapy) and those with well controlled disease. On the other hand, regardless the time elapsed since diagnosis, about 50% of patients say the illness affects their lives. Our study did have some limitations, mainly because of its design. Firstly, we have used an unvalidated questionnaire, but we think it may improve knowledge of the social impact of epilepsy diagnosis, as we have analyzed possible differences against a control group. Secondly, the reliability of the results is based on self-reporting lifestyle factors, so it is possible patients might have exaggerated healthier habits. Thirdly, a selection bias was committed because patients were selected from an epilepsy unit, so it is unclear how generalizable our results are. In any case, epilepsy diagnosis may have influenced the lifestyle of our patients, who seem to have become aware of the importance of healthier lifestyle habits. More research is needed in order to further evaluate the overall impact of epilepsy diagnosis. A global approach including psychosocial strategies might be necessary when it comes to information surrounding the disorder, so that epilepsy may cease to be a reason for self-discrimination in the future.
5. Conclusions Being diagnosed with epilepsy has always been thought to change patients' daily lives. Our study, however, shows that this disorder is not simply a cause for fear in patients, but that if it does cause them to change their habits, this change is made towards a healthier lifestyle. On the other hand, it seems they take more drugs for anxiety or depression than people without epilepsy, clearly highlighting the impact suffering a chronic disorder can have. Further research is necessary to allow us to better help our patients.
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Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh
Do people with epilepsy have a different lifestyle? Clara Aguirre a,⁎, Sonia Quintas a, Ana María Ruiz-Tornero a, Guadalupe Alemán b, Ana Betariz Gago-Veiga a, María de Toledo a, Jose Vivancos a a b
Epilepsy Unit, Neurology Department, Institute for Health Research, Hospital Universitario de La Princesa, Madrid, Spain Preventative Medicine Department, Hospital Universitario de La Princesa, Madrid, Spain
a r t i c l e
i n f o
Article history: Received 2 April 2017 Revised 3 June 2017 Accepted 5 June 2017 Available online xxxx Keywords: Epilepsy Toxic habits Antidepressants Lifestyle Body mass index
a b s t r a c t Background: Epilepsy is one of the most common neurological diseases. Its high prevalence, economic relevance and impact on daily life make it crucial that we study this condition in further detail. Our study seeks to investigate whether the lifestyle of people diagnosed with epilepsy is different to that of people without epilepsy, in order to better understand our patients. Methods: We designed and delivered a questionnaire about quality of life and daily habits to patients from our hospital's Epilepsy Unit. We also delivered the questionnaire to a control group with similar demographic characteristics. Lifestyle differences between patients and control group members were analyzed. Patients were further divided according to the type of epilepsy, time since diagnosis, seizure frequency and pharmacotherapy. Results: A total of 278 people were interviewed (85 patients, 193 controls). There was no difference in educational level, marital status and healthy habits (sports, reading and diet) between the groups. However, patients with epilepsy were more often unemployed (p b 0.05) and had a healthier lifestyle (lower body mass index, lower alcohol consumption and a tendency towards smoking less). Anxiolytic-antidepressant intake was higher in patients with epilepsy. In terms of the type of epilepsy, patients with focal epilepsy exercised more than those with generalized epilepsy; no other statistically significant differences were found between the individuals studied. Discussion: Epilepsy diagnosis does not seem to negatively alter the daily life of patients; in fact, many adopt a healthier lifestyle after diagnosis. The risk of antidepressant/anxiolytic intake is, however, higher, which could reflect the impact this chronic condition still has at a social level. © 2017 Elsevier Inc. All rights reserved.
1. Introduction Since 2005 and according to the ILAE [1], epilepsy has been considered “a disorder of the brain characterized by an enduring predisposition to generate epileptic seizures, and by the neurobiological, cognitive, psychological, and social consequences of this condition”. Unfortunately, despite medical progress in terms of pharmacology and health education, epilepsy diagnosis may still have a social impact and some patients might, therefore, be discriminated against. Previous studies have focused mainly on toxic habits or quality of life of patients with epilepsy. In this sense, polytherapy, frequency of seizures, drug side effects, sex, marital status and education have been described as negative factors associated with health-related quality of life [2,3]. In another study conducted in Ohio [4], the authors showed that the rate of cigarette smoking doubled in people with epilepsy compared to the population without epilepsy. Recently, the ILAE Task Force on Sports and Epilepsy has described how seizure control might be favorably affected by physical exercise, producing health and psychosocial benefits [5]. The current study ⁎ Corresponding author. E-mail address: [email protected] (C. Aguirre).
http://dx.doi.org/10.1016/j.yebeh.2017.06.006 1525-5050/© 2017 Elsevier Inc. All rights reserved.
seeks to investigate whether the overall lifestyle (including healthy and toxic habits) of people diagnosed with epilepsy differs from that of people without epilepsy in our health area. This area (mainly Salamanca district in Madrid) is known to be the second district with the highest income per capita in Madrid (22.255 euros/habitant) and also for its low unemployment rate (below 10%), according to the Instituto de Estadística de la Comunidad de Madrid (http://www. madrid.org/iestadis/).
2. Resources and methods 2.1. Study design This is a case control, descriptive and observational study. The main objective of the study was to investigate the lifestyle of patients with epilepsy under treatment in the Epilepsy Unit at the Hospital Universitario de La Princesa, Madrid. In the first phase, after reviewing the literature on the topic, a questionnaire was carefully designed (Fig. 1) to assess the main lifestyle characteristics of people with epilepsy. We also aimed to study if our patients thought the disease might have changed these lifestyle somehow..
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Fig. 1. Questionnaire designed to assess the main lifestyle characteristics.
In the second phase, this questionnaire was delivered to 85 patients with epilepsy; controls were chosen randomly from a healthy population within the same urban area. In addition, these controls had to meet the following requirements: similar sex distribution, age and demographic characteristics as patients studied. The total number of
individuals interviewed was 278 (85 patients and 193 controls). This second phase took place between October 2013 and March 2014. Inclusion criteria were established: over 18 years old who agreed to take part in the study, regardless sex, marital status, nationality, educational level or epilepsy characteristics. Exclusion criteria were: mental
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deficiency, epilepsy surgery and limiting comorbidities. The questionnaire was answered anonymously. With a total of 13 questions (Fig. 1), we obtained the following dependent variables: sex (female, male), age, BMI based on self-reported biometric features (underweight, normal weight, overweight, obese), educational level (low, medium, high), employment status (employed, unemployed, retired, disabled), marital status (single, married, divorced, widower, other), living alone (yes, no), smoking (smoker, non-smoker, former smoker), alcohol intake (daily, at the weekend, sporadic, never, stopped after diagnosis), sport (yes, no), reading (yes, no), healthy diet (yes, no), anxiolytic/antidepressant drugs (yes, no). Patients with epilepsy were also asked to answer six more questions regarding influence of the diagnosis on their lifestyle: relationship between beginning/stopping smoking with the diagnosis (yes, no), relationship between smoking and different antiepileptic drugs (yes, no), influence of epilepsy on leisure activities (yes, no) and how this relationship has been (more fear, more limitations, more often, other), relationship between seizures and sport (more frequent, not related), and relationship between diagnosis and reading habit (more/less frequent, not reading at all). Data about the type of epilepsy was recorded retrospectively from medical records. The study passed the ethics committee approval.
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Table 1 Case and controls baseline characteristics.
Sex (number of men/% of men) Age (medium age in each group, in years) Educational level Low Medium High Work situation Active Unemployed Retired Disability Other Marital status Single Married Divorced Widowed Other Live alone (N/%) BMI Underweight Normal weight Overweight Obesity
Patients with epilepsy (N = 85)
Controls (N = 193)
39 (45,9%) 43,7 20 (23.8%) 28 (32.5%) 37 (43.8%) 32 (37.2%)* 26 (30.8%)* 16 (19.2%) 11 (12.8%)* 0* 44 (51.2%) 33 (39.3%) 5 (6%) 2 (2.4%) 1 (1.2%) 10 (11.9%) 2 (2.7%) 54 (63.5%)* 21 (24.3%) 8 (9.5%)
89 (46,1%) 46,1 37 (19.4%) 74 (38.3%) 82 (42.2%) 129 (66.7%)* 29 (14.8%)* 27 (14.2%) 1 (0.5%)* 7 (3.8%)* 80 (11.7%) 91 (46.9%) 12 (6.3%) 10 (5.2%) 0 35 (17.9%) 6 (3.2%) 95 (49.5%)* 64 (33%) 28 (14.4%)
Entries rendered in bold and marked with * are in those we found significant difference.
2.2. Statistical analysis Qualitative variables are presented in absolute and relative frequencies. Quantitative variables are expressed in mean and standard deviation, when normal distribution applies; or median and interquartile (p25-75) if the variable followed an asymmetric distribution. In order to evaluate factors that might be related, univariate analysis was initially performed by chi-square, Fisher's exact test and ANOVA. A multivariate model was adjusted from logistic regression to study factors that were independently associated with overall satisfaction. The factors included in the multivariate model were those significant in univariate analysis and/or clinically outstanding. A significance level of 5% (p b 0.05) was set for all comparisons. Data was processed and analyzed with SPSS v19.0 for Window. 3. Results 3.1. Differences between patients and controls 85 patients with epilepsy and 193 controls were interviewed. Controls were also obtained from our health area and had a similar distribution of demographic characteristics. The average age of the patients was 43.7 years. The controls were 46.1 years old on average. 45.9% of patients were male (N = 39). 46.1% of the controls represented the male sex (N = 89). Among patients with epilepsy, 52.94% (45) have focal epilepsy and 47.06% (40) a generalized form. When it comes to time since diagnosis, 60% (51) were diagnosed more than 10 years ago, 36.47% (31) between 1 and 10 years ago and just 3 patients (3.53%) were diagnosed less than one year before the study was performed. Most of our patients were receiving more than one treatment (63.53%) at the time the survey was performed. Nevertheless, the majority had well-controlled epilepsy: 36.9% of patients had not had a seizure in the last year, 38.1% had had less than one seizure per month, 15.48% had between 1 and 10 seizures every month and just 9.52% had daily seizures. We did not find any statistically significant difference between the educational level of patients and controls. We did, however, find that patients with epilepsy in our group were more often unemployed than controls (p b 0.05). There were no statistically significant differences between the marital status or cohabitation status (alone or accompanied) of the two groups. Although both patients and controls claimed to have a balanced diet, there was a difference (p b 0.05) in body mass index (BMI): patients
tended to be at their normal weight more often than controls. Results are shown in Table 1. Regarding toxic habits (smoking and alcohol consumption), there was no difference in smoking between the two groups, although 15.4% of patients claimed they had stopped smoking tobacco after being diagnosed with epilepsy, whereas 4.5% had started smoking after diagnosis. We found drinking alcohol frequently or sporadically was more common in people without epilepsy (p b 0.05). 10% of patients had stopped consuming alcohol after diagnosis. Regarding what we called “healthy habits” (sports, reading, diet), we did not find any significant difference between patients and people without epilepsy. 8.8% of patients did, however, say they had found a relationship between practicing sports and having seizures, 33.3% of them said they were afraid of leisure activities and 50% of them found a restriction in their ability to take part in them. 29.6% of our patients were under antidepressant or anxiolytic treatment compared to 11.6% of controls (p b 0.05). In the multivariate logistic regression, we found that the risk of antidepressant/anxiolytic intake is 3.59 times higher in patients with epilepsy (IC 95: 1.73–7.44). We also found that the association between epilepsy and living alone was 0.34 (IC: 95: 0.13–0.89). None of the other variables measured were significant in the results of the multivariate logistic regression. Table 2 shows the results regarding healthy and toxic habits. Results marked with * were found to be different between the two groups with statistical significance (p b 0.05).
Table 2 Toxic and healthy habits.
Smoking
Alcohol drinking
Sports regularly Reading regularly Healthy diet
Smoker Never smoked Former smoker Frequently Sporadically Never Quitted after diagnosis
Patients with epilepsy (N = 85)
Controls (N = 193)
17 (20%) 51 (60%) 17 (20%) 4 (4.9%)* 28 (33.3%) 44 (51.9%)* 9 (9.9%) 55 (64.6%) 63 (73.8%) 66 (78%)
59 (30.6%) 111 (57.5%) 23 (11.9%) 62 (32.3%)* 89 (46%) 42 (21.7%)* 0 118 (60.9%) 156 (81.1%) 144 (75.4%)
Entries rendered in bold and marked with * are in those we found significant difference.
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3.2. Results according to type of epilepsy, time since diagnosis, seizure frequency and pharmacotherapy Regarding type of epilepsy, 52.4% of our patients had focal epilepsy, while the remaining 47.6% had generalized epilepsy. Patients with focal epilepsy exercised more (78.6% vs 48.7%, p b 0.05) and showed a tendency to have a lower alcohol intake (40.9% vs 25%, ns). No significant differences were found regarding employment status (34.2% vs 41.0%), reading (81% vs 64.9%), diet (78.6% vs 76.9%), antidepressant or anxiolytic treatment (22.5% vs 35%) or smoking (13.6% vs 27.5%). 59.5% of patients had been diagnosed more than 10 years ago and 36.9% from 1 to 10 years ago. The patients diagnosed less than 10 years ago had a higher educational level (64.5% vs 28.3%, p b 0.05) and were less overweight (10.7% vs 34.1%, p b 0.05). Smoking, leisure activities, sports and alcohol intake questions were answered with no statistically significant differences between the two groups. Most patients reported they had never drunk, regardless time of evolution. Another interesting fact was that 4.3% of patients diagnosed more than 10 years ago had stopped drinking after diagnosis, compared to 12.9% diagnosed between 1 and 10 years ago. No statistically significant differences were found in any aspect when comparing patients according to frequency of seizures (daily, N1/month, b 1/month, 1 year free of seizures) or number of antiepileptic drugs (mono or polytherapy). While 8.8% of patients thought that seizure frequency increases with sport, 91.2% of patients thought that there was no link between epilepsy and sport. Among those who practiced sports often, 80.8% were having less than one seizure per month or even a year free of seizures. Table 3 shows the differences found according to type of epilepsy and time since diagnosis. Results marked with * were found to be different between the two groups with statistical significance (p b 0.05).
4. Discussion In our study, we found that patients with epilepsy are more often unemployed, despite having the same educational level, and have a higher anxiolytic-antidepressant intake than the control group. We have not found statistically significant differences in educational level, marital status and healthy habits between patients with epilepsy and the control group. Validated questionnaires found in existing literature have focused on the quality of life of patients with epilepsy, often employing a whole host of tests that also included adverse effects, seizure severity and cognitive symptomatology [6,7]. Although these tools are useful in helping our patients, administration time limits their application in normal clinical practice and they do not answer some of the more specific questions about lifestyle. Recently, in Lithuania a cross-sectional study [8] demonstrated that epilepsy seriously influences family life. In the present study, we too wanted to develop a survey to include these and other aspects of daily life, such as practicing sport, reading habits or diet. Moreover, and unlike other studies, we wanted to incorporate a control group to try to see the real impact of epilepsy diagnosis on lifestyle. There are a few studies that have analyzed data on the lifestyle of patients with epilepsy. One such example is an important epidemiologic study conducted in Spain (EPIBERIA questionnaire) and published recently [9,10], which focused on demographic and clinical characteristics. The type of epilepsy was generalized in 22.58% of patients vs 76.34% presenting focal ones. Regarding etiology, unknown led with 45.16%, followed by structural/metabolic (32.25%) and, finally, genetic (22.6%). The majority of patients were undergoing antiepileptic treatment: monotherapy (44.08%), biotherapy (37.63%) and polytherapy (17.2%). 84% were classified under active epilepsy (seizure in the last 5 years), from which 62% had had at least one seizure in the last year.
Table 3 Differences according to the type of epilepsy and the time since the diagnosis. Type of epilepsy
Sex (number of men/%) Age (medium age in each group) Educational level Low Medium High Work situation Active Unemployed Retired Disability Marital status Single Married Divorced Widowed Other Live alone (N/%) BMI Underweight Normal Overweight Obesity Smoking Smoker Never Former Alcohol drinking Frequently Sporadically Never Have quitted Sports regularly Reading regularly Healthy diet Antidepressant/anxiolytic treatment
Time since the diagnosis
Focal (N = 45)
Generalized (N = 40)
N10 years (N = 51)
1–10 years (N = 31)
b1 year (N = 3)
21 (47.7%) 44 (SD: 15) 6 (14.6%) 13 (31.7%) 22 (53.7%) 15 (34.2%) 13 (28.9%) 11(23.7%) 6 (13.2%) 23 (53.5%) 15 (34.9%) 3 (7%) 1 (2.3%) 1 (2.3%) 7 (16.3%) 2 (4.7%) 28 (62.8%) 11 (23.3%) 4 (9.3%) 6 (13.6%) 29 (63.6%) 10 (22.7%) 1 (2.3%) 18 (40.9%) 22 (47.7%) 4 (9.1%) 35 (78.6%)* 36 (81%) 35 (78.6%) 10 (22.5%)
18 (45%) 42 (SD: 16) 13 (33.3%) 13 (33.3%) 13 (33.3%) 17 (41%) 13 (33.3%) 5 (12.8%) 5 (12.8%) 20 (50%) 17 (42.5%) 2 (5%) 1 (2.5%) 0 3 (7.5%) 0 26 (64.5%) 10 (25.8%) 4 (9.7%) 11 (27.5%) 23 (57.5%) 6 (15%) 3 (8.4%) 10 (25%) 22 (55.6%) 5 (11.1%) 19 (48.7%)* 26 (64.9%) 31 (76.9%) 14 (35%)
25 (50%) 45 (SD: 13) 16 (30.4%) 21 (41.3%) 14 (28.3%)* 18 (34.8%) 19 (37%) 9 (17.4%) 5 (10.9%) 21 (42%) 25 (48%) 3 (6%) 1 (2%) 1 (2%) 6 (12.2%) 1 (2.3%) 29 (56.8%) 17 (34.1%)* 4 (6.8%) 13 (26%) 30 (58%) 8 (16%) 3 (6.5%) 20 (39.1%) 26 (50%) 2 (4.3%) 28 (55.3%) 34 (67.4%) 36 (70.8%) 14 (30.4%)
11 (35.5%) 41 (SD: 17) 4 (12.9%) 7 (22.6%) 20 (64.5%)* 12 (39.3%) 8 (25%) 5 (17.9%) 6 (17.9%) 21 (66.7%) 7 (23.3%) 2 (6.7%) 1 (3.3%) 0 4 (12.9%) 1 (3.6%) 22 (71.4%) 3 (10.7%)* 5 (14.3%) 3 (9.7%) 21 (67.7%) 7 (22.6%) 1 (3.2%) 9 (29%) 17 (54.8%) 4 (12.9%) 23 (74.2%) 25 (80%) 28 (90%) 9 (29%)
3 (100%) 49 (SD: 30) 1 (33.3%) 0 2 (66.7%) 2 (66.7%) 0 1 (33.3%) 0 2 (66.7%) 1 (33.3%) 0 0 0 0 0 3 (100%) 0 0 1 (33.3%) 1 (33.3%) 1 (33.3%) 0 0 1 (33.3%) 2 (66.7%) 3 (100%) 3 (100%) 2 (66.7%) 0
Entries rendered in bold and marked with * are in those we found significant difference.
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This study did not, however, evaluate the socio-demographic aspects of epilepsy patients' daily life in our country. We believe our research plays a crucial role in drawing a picture of this fascinating aspect. Much of the data evaluated when comparing patients with and without epilepsy showed no statistically significant difference, which we think is very important. The fact that no differences between patients with epilepsy and controls have been found could lead us to think that the social view of the disease is improving. Moreover, patients with epilepsy seem to have healthier life habits, as they exercise more, regardless of the possibility of a seizure. We have not, however, studied whether our patients have fewer comorbidities, such as vascular risk factors, stroke, etc. It would be advisable to complete this aspect of our research with a larger study evaluating different comorbidities that may affect these individuals. Some studies have already compared the lifestyle of patients with epilepsy and patients suffering from other chronic conditions. In a national population-based study conducted in Canada using the 2001–2005 Canadian Community Health Survey [11], the health status and health-related behaviors in patients with epilepsy were compared to those suffering from migraines, diabetes and to the general population (a total of 400,005 individuals were interviewed). It was found that people with epilepsy had lower quality of life, family function and social support. Those with epilepsy tended to have more disability days and limitation in activities, as well as lower annual income than other groups. They also claimed to practice less sport and the prevalence of obesity was higher in those with epilepsy than in the general population. That study also showed people with epilepsy had a higher prevalence of smoking, but lower levels of alcohol consumption. The prevalence of fruit and vegetable consumption was similar for those with and without epilepsy. Different surveys carried out in the USA [4,12,13] showed poorer physical and mental health in epilepsy patients, as well as lower educational attainment, annual income and sport practice. These previous studies also found that people with epilepsy smoke more than the population without epilepsy. We would like to emphasize the differences our study showed compared to these previous ones. Our group of patients with epilepsy has the same educational level and marital status as those interviewed without epilepsy. It is important to take into account that, due to the area covered by our hospital, the socioeconomic level of our patients is probably higher than those included in previous studies. We did find that despite a similar educational level, the rate of unemployment was higher in the epilepsy cohort. The reason is not well known, but it could be associated with what previous studies [14,15] have found regarding epilepsy impact: the possible psychologically and social noxious effects of a publically witnessed illness [16], and the sense of frustration regarding social interactions [17]. We hypothesized that medication effect (as sedation), and cumulative cognitive impairment in some cases could also be related with the difficulty finding a job our patients might have. As opposed to what other studies found [11], our patients tend to be normal weight (according to body mass index) more often than the control group. Furthermore, we find it very significant that in our group there were no differences in “healthy habits” (sports, reading, diet) between people with epilepsy and controls. In our study, patients with epilepsy tend to drink alcohol less frequently than controls. This is very similar to what it is described in previous studies, which we think is related to the advice given when diagnosed, as alcohol increases risk of seizures. We would like to highlight that 4.3% of patients diagnosed more than 10 years ago and 12.9% diagnosed between 1 and 10 years ago had stopped drinking alcohol due to their epilepsy diagnosis. This could be due to drug interactions or the possibility of increasing seizure risk. In patients diagnosed with the illness less than 10 years ago, we found educational level to be high and frequency of overweight
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individuals to be lower. Although it would be impossible to pinpoint a single cause for these facts, it may be because these patients are younger than those who were diagnosed 10 or more years ago. Many studies show a higher prevalence of psychiatric comorbidities in patients with epilepsy [11,18,19]. It has been reported that 30% of people with epilepsy unresponsive to treatment have depressive symptoms that are clinically relevant [20]. Other studies showed that 50% of these patients and 10% of patients with well-controlled epilepsy present depressive symptoms [21]. Compared to the general population, depression is 3 to 10 times more common in patients with refractory epilepsy. In our study, we found that patients with epilepsy are given antidepressant or anxiolytic treatment three times more frequently than those without epilepsy. It is worth bearing in mind that our cases came from the “Epilepsy Unit” of our hospital, which means that some of them are refractory. Our results in this area are, very similar to those found in previous studies, highlighting the importance of identifying psychiatric comorbidities in people with epilepsy. There are not many studies analyzing the influence of the type of seizures, frequency, time since diagnosis and mono/polytherapy on patient lifestyle. In our study, we conclude that these factors do not play a decisive role in patient lifestyle, except for patients without generalized seizures, who practiced more sports than patients with generalized seizures, with statistically significant difference. Seizure frequency also plays an important role; among those who practiced sports often, 80.8% were having less than one seizure per month or even a year free of seizures. This finding could be due to the huge limitation and influence on routine when generalized seizures occur. On the other hand, when having a focal seizure, patients do not lose consciousness and this type of seizure could be considered “mild”. Furthermore, patients with focal epilepsy also had no statistically significant tendency to consume more alcohol than patients with generalized epilepsy. These facts have not been identified in previous studies [3,13,22]. Finally, in contrast to previous studies [23], we found no differences in the practice of sports between those patients with worse disease control (high frequency of seizures and/or combination therapy) and those with well controlled disease. On the other hand, regardless the time elapsed since diagnosis, about 50% of patients say the illness affects their lives. Our study did have some limitations, mainly because of its design. Firstly, we have used an unvalidated questionnaire, but we think it may improve knowledge of the social impact of epilepsy diagnosis, as we have analyzed possible differences against a control group. Secondly, the reliability of the results is based on self-reporting lifestyle factors, so it is possible patients might have exaggerated healthier habits. Thirdly, a selection bias was committed because patients were selected from an epilepsy unit, so it is unclear how generalizable our results are. In any case, epilepsy diagnosis may have influenced the lifestyle of our patients, who seem to have become aware of the importance of healthier lifestyle habits. More research is needed in order to further evaluate the overall impact of epilepsy diagnosis. A global approach including psychosocial strategies might be necessary when it comes to information surrounding the disorder, so that epilepsy may cease to be a reason for self-discrimination in the future.
5. Conclusions Being diagnosed with epilepsy has always been thought to change patients' daily lives. Our study, however, shows that this disorder is not simply a cause for fear in patients, but that if it does cause them to change their habits, this change is made towards a healthier lifestyle. On the other hand, it seems they take more drugs for anxiety or depression than people without epilepsy, clearly highlighting the impact suffering a chronic disorder can have. Further research is necessary to allow us to better help our patients.
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