Quality of life of people with epilepsy in Iran, the Gulf, and Near East

PURPOSE: To study the impact of epilepsy and its treatment on the quality of life of people living in Iran and in countries in the Gulf and Near East. METHODS: Clinical, demographic, and psychosocial details were collected through the use of a self-completed questionnaire distributed to patients attending hospital outpatient clinics. RESULTS: Data were collected from 3,889 people with epilepsy from 10 countries. More than 40% of all respondents had frequent seizures, and reported levels of side effects from medication were high, the most commonly reported being nervousness, headaches, and tiredness. A significant number of respondents reported changing their medications because of side effects or poor seizure control. Respondents reported that epilepsy and its treatment had a significant impact on a number of different aspects of their daily lives. A significant number of respondents felt stigmatized by their epilepsy. Reported health status was reduced when compared with that of people without epilepsy, particularly for physical and social functioning and energy and vitality, as assessed by using a generic health status measure, the SF-36. CONCLUSIONS: This is the largest study to date documenting the impact of epilepsy and its treatment in Iran, the Gulf, and Near East regions. Differences were found between the quality-of-life profiles of respondents in this study and those who participated in an earlier parallel study in Europe.     

The stigma of epilepsy: a European perspective

Summary: Purpose : To study the stigma of epilepsy in a European sample.
Methods : Clinical and demographic details and information about patient-perceived stigma was collected by using self-completed questionnaires mailed to members of epilepsy support groups.
Results : Stigma data were collected from >5,000 patients living in 15 countries in Europe. Fifty-one percent reported feeling stigmatised, with 18% reporting feeling highly stigmatised. High scores were correlated with worry, negative feelings about life, long-term health problems, injuries, and reported side effects of antiepileptic drugs (AEDs). Cross-cultural comparisons revealed significant differences between countries. A multivariate analysis identified impact of epilepsy, age of onset, country of origin, feelings about life, and injuries associated with epilepsy as significant contributors on scores on the stigma scale.
Conclusions : This study confirms the findings of previous studies that have identified the importance of both clinical and nonclinical factors in understanding the stigma of epilepsy. The results of cross-cultural differences require further explanation, and much more research should be conducted to reduce the stigma associated with epilepsy.     

Intractable epilepsy: A survey of patients and caregivers

The social and health consequences associated with epilepsy are often magnified among patients with refractory epilepsy. Despite recent advances in the treatment of seizure disorders, many people with epilepsy continue to suffer from uncontrolled seizures and adverse side effects from medical therapy. This survey is the first to focus solely on the experiences, attitudes, and quality of life of a refractory epilepsy population, both those with the condition and their caregivers. To participate in this survey, respondents had to currently be experiencing seizures or troubling treatment side effects and had to have tried at least two different epilepsy medications. These survey data represent three groups of participants (n = 903): those with epilepsy who self-reported on their condition (Group 1, n = 503), the caregivers of those with refractory epilepsy (Group 2, n = 200), and those with epilepsy who had their condition reported on by a caregiver (Group 3, n = 200). This survey revealed that the negative consequences associated with epilepsy tend to be greater among those experiencing treatment side effects and a greater number of seizures. Physicians must take into account medication side effects and quality-of-life issues when treating patients with epilepsy.     

Levels of epilepsy stigma in an incident population and associated factors

We assess the psychometric properties of a revised stigma scale and report the levels of stigma in an incident population and the clinical, demographic, and quality-of-life factors associated with doing so. A total of 1566 people with new-onset epilepsy completed the revised stigma scale, as part of the Standard and New Antiepileptic Drugs (SANAD) trial. The revised scale had good internal consistency (0.85) and good concurrent validity. It also reduced the floor and ceiling effects associated with the original scale. Fifty-four percent of people reported feeling stigmatized (47.3% mild-moderate stigma, 6.1% high stigma). Reduced sense of mastery, younger age (<50), side effects of medication, poorer cognitive function, feeling socially restricted, poor global quality of life, and more than four seizures at baseline were significant factors determining scores on this revised scale. These should be the focus of interventions to try and reduce feelings of stigma in those with new-onset epilepsy.     

Felt stigma and impact of epilepsy on employment status among Estonian people: exploratory study.

This article examines the impact of epilepsy and its treatment on employment status and the extent of stigma among patients with epilepsy. Clinical and demographic data concerning patients examined during a recent epidemiological survey were obtained from medical notes and postal self-completed questionnaires. Information was collected from 90 patients aged 16-70 years. A third of the respondents had been seizure-free during the last year. Thirty-nine percent were working full-time, 24% were working part-time and 11% were unemployed. Sixty-three percent from those working part-time or unemployed considered their epilepsy to be a significant reason for this. Overall, 55.4% believed they had been treated unfairly at work or when trying to get a job. Fifty-one percent of respondents felt stigmatized by epilepsy, 14% of them highly so. The level of employment among epileptic people was not lower than in the general population. The percentage of stigmatization in general and the percentage of the severely stigmatized was as high or even higher than in other studies. Occurrence of stigma and its severity depended first and foremost on the type of seizures. The frequency of seizures was not clearly related to this.     

Level of knowledge about epilepsy among Polish patients with epilepsy and their families in the European study SPOKE (Sanofi-Synthelabo Programme for Outcome Knowledge of Epilepsy)

BACKGROUND AND PURPOSE: The main aim of the European Study SPOKE (Sanofi-Synthelabo Programme for Outcome Knowledge of Epilepsy) designed by the Department of Neurosciences, Walton Hospital in Liverpool and the Centre for Health Services Research at the University of Newcastle upon Tyne, England, was to describe levels of knowledge about epilepsy among people with epilepsy and their families. It was equally important to identify gaps in understanding the most important aspects of the illness as well as to identify characteristics of people who score poorly on the Epilepsy Knowledge Questionnaire (EKQ). Another aim was to consider the implications of identified gaps in knowledge for future educational and psychosocial interventions. MATERIAL AND METHODS: The study was conducted in 10 European countries and included 6156 people with epilepsy and 6506 members of their families. Results presented here relate to data for Poland only, where the examined population consisted of 1028 patients with epilepsy. 1033 questionnaires were returned by carers. RESULTS: Over 40% of all respondents had frequent seizures, and one third were seizure free. Scores on the Epilepsy Knowledge Questionnaire were high for the majority of respondents, but generally lower than in most of the countries. With reference to some aspects of illness important gaps in knowledge have been demonstrated. For example, it was shown that a significant number of respondents provided incorrect answers to questions relating to aspects of the etiology of epilepsy and administration of antiepileptic drug medication. There were a number of significant differences between the profiles of high and low scorers on the EKQ; high scorers were likely to have spent longer on education, have lower scores on the impact of epilepsy scale and report better adjustment to their epilepsy. CONCLUSIONS: The results of the study once again underline the importance of continued information among patients with epilepsy and their families in order to achieve.     

People with epilepsy lack knowledge about their disease

For people with epilepsy, knowledge of their disease is an important factor in optimizing the control of their seizures. Better-informed patients can more easily participate in the treatment process, reducing disease-related anxiety and coping better with stigma. This study was developed in a Lithuanian tertiary epilepsy center to assess knowledge of disease among people with epilepsy, to estimate differences in disease knowledge between patient groups, and to evaluate how epilepsy influences patients' daily lives. We asked patients to complete a questionnaire and collected information from outpatient cards on epilepsy etiology, type of seizures, findings of diagnostic tests, and information about patients' antiepileptic drugs. Our results showed that people with epilepsy have poor knowledge about their disease: almost half of the patients did not identify the cause of their illness or their type of seizures; most did not know the results of their EEG and neuroimaging studies. Patients also lacked general knowledge about their disease and implications for lifestyle. However, cognitive deficits were not assessed in this study, and this may have affected the answers where patients were required to recall and name their drugs or the dosage of medication. Almost half of them believed that epilepsy had changed their lives significantly and reported anxiety and constant fear of seizures. Patients were also afraid to have because of the possibility they would also have epilepsy. There is clearly a great need for improved educational intervention for people with epilepsy.     

The association of stigma with self-management and perceptions of health care among adults with epilepsy

OBJECTIVE: The purpose of this study was to examine the perception of stigma among adults with epilepsy including its association with epilepsy self-management and perceptions of health care. METHODS: Participants for the study were recruited from two epilepsy centers and a neurology clinic. Individuals agreeing to participate in the study were asked to complete three assessments each 3 months apart. Data were collected from 320 adult men and women with epilepsy; 314 provided responses on stigma and were included in this analysis. RESULTS: Participants ranged in age from 19 to 75 years (mean=43). Fifty percent of the sample was female, and 80% was white. The mean age of seizure onset was 22 years, and 76% of participants reported having had a seizure within the past year. Analysis suggests levels of perceived stigma are similar for men and women and across ethnic and age groups. However, participants who were not married or living with a partner, were not working for pay, and had limited income reported higher levels of stigma than did married participants, those working for pay, and those in higher income brackets. Participants reporting higher levels of stigma included those who had their first seizure before the age of 50 and a seizure in the last year. Participants whose seizures interfered more with activities, who rated their seizures as under less control, and who were not legally able to drive also reported higher levels of stigma. Tests of association between stigma and health-related variables revealed that participants reporting higher levels of perceived stigma also reported lower levels of self-efficacy to manage epilepsy; more negative outcome expectancies related to treatment and seizures; and lower levels of medication management, medication adherence, and patient satisfaction. However, they also reported greater management of information related to seizures. In regression analysis, income, age at first seizure, seizures during the past year, lower self-efficacy, negative outcome expectancies for seizures, and less patient satisfaction explained 54% of the variance in perceived stigma. CONCLUSIONS: The results of the study suggest that perceived stigma is significant for people with epilepsy and is associated with factors that are known to be important in the management of epilepsy. Understanding who is at greatest risk for feeling stigmatized could lead to the development of preventive measures.     

The Personal Impact of Epilepsy Scale (PIES)

ObjectiveThe impact of epilepsy is manifest by effects related to seizures and side effects of therapy and comorbidities such as depression. This report describes the development of a brief patient-reported outcome (PRO) instrument, the Personal Impact of Epilepsy Scale (PIES), to measure the influence of epilepsy overall and in each of these domains.MethodsInstrument development followed standard procedures and an FDA Guidance. People with epilepsy were surveyed with open-ended questions to derive major themes of their concerns, resulting in 4 key areas: seizures, side effects, comorbidities, and overall quality of life (QOL). A preliminary set of 152 questions was based on these themes and completed by 50 patients, age 42.7 (range: 21–71) years, concurrent with comparator instruments, including the NH Seizure Severity Scale (NHSSS), the Liverpool Adverse Events Profile (LAEP), the Quality of Life in Epilepsy (QOLIE-31) scale, the Beck Depression Inventory, and the Epilepsy Foundation Depression: A Checklist. A multiple regression model indicated which PIES measures were associated with scores from the comparator instruments. Questions in each of the domains were selected for correlations and nonduplication. Test–retest consistency at a 3-day interval was completed by 38 subjects and a final set of questions constructed.ResultsThe final question set comprised 25 items: 9 about characteristics of seizures, 7 about medication side effects, 8 about comorbidities, and 1 about overall quality of life. All items had 5 response choices (0–4), with higher scores reflecting more negative status. A total of 46 subjects completed the 25 questions. Cronbach's alpha was 0.87, indicating good internal consistency. Each of the three domains correlated well with the overall QOL item. The questions pertaining to seizures correlated with the NHSSS, the side effect questions with the LAEP, and the comorbidity questions with the QOLIE-31.ConclusionThe PIES provides a simple, brief PRO measure as a profile of overall impact of seizures, medication side effects, comorbidities, and overall QOL for people with epilepsy. Further study will explore sensitivity to change quantification of the minimal clinically significant change.     

Cross-cultural differences in levels of knowledge about epilepsy

PURPOSE: To study how much people with epilepsy in Europe know and understand about their condition and how this might affect their lives. METHODS: Clinical, demographic, psychosocial details and information assessing knowledge were collected by using self-completion questionnaires mailed to members of epilepsy support groups. RESULTS: Data were collected from 6,156 people with epilepsy from ten European countries. There were significant between-country differences in all variables considered. Overall levels of knowledge were acceptable when measured by the epilepsy knowledge questionnaire (EKQ, medical items). However, there were some gaps in knowledge, particularly in issues relating to medication and cause of epilepsy. CONCLUSIONS: This is the largest study of its kind to date. Results clearly highlighted that levels of knowledge differed significantly between countries. Overall, people with epilepsy are reasonably well informed about epilepsy, although some gaps in knowledge were evident.