Health-related quality of life in Russian adults with epilepsy: The effect of socio-demographic and clinical factors

doi:10.1016/j.yebeh.2012.09.042

Epilepsy & Behavior

Volume 25, Issue 4, December 2012, Pages 670-675

https://doi.org/10.1016/j.yebeh.2012.09.042 Get rights and content

Abstract

Objective

The aim of this study was to evaluate socio-demographic and clinical factors influencing the health-related quality of life (HRQOL) of adult patients with epilepsy in a naturalistic treatment setting in Russia.

Methods

The QOLIE-31 questionnaire and the Beck Depression Inventory (BDI) were completed by 208 patients with a broad clinical spectrum of epilepsy (the mean age was 31.49 ± 13.20 years and ranged from 18 to 74 years).

Results

In Russian adult patients with epilepsy, lower mean QOLIE-31 scores were obtained compared with previously published international data for overall HRQOL, emotional well-being, and cognitive functioning and social functioning subscales (p < 0.001). Univariate analysis revealed that duration of epilepsy negatively correlated with all QOLIE-31 subscores (p < 0.05), except for emotional well-being (p = 0.1). In multivariate regression analysis, BDI depression score was the predictor of overall score and all QOLIE-31 domains, except for emotional well-being. Age could be considered as a predictor of cognitive and social functioning, medical effects, and the total QOLIE -31 score. Seizure frequency was a factor associated with all HRQOL domains, except for medication effects and emotional well-being, whereas gender, education, family status, seizure type, employment, lateralization of epileptic foci, number of antiepileptic drugs, and the reported adverse events did not significantly affect HRQOL.

Conclusion

The present study has revealed that longer duration of epilepsy, older age, higher seizure frequency, and depression are the potential predictors of worse HRQOL in adult Russian patients with epilepsy.

Highlights

► Low QOLIE-31 scores were obtained in Russian adult patients with epilepsy. ► Duration of epilepsy negatively correlated with HRQOL. ► Older age, seizure frequency and depression could predict worsening of HRQOL. ► Other factors did not significantly affect HRQOL.

Introduction

Health-related quality of life (HRQOL) is important in the evaluation of clinical success of medical or surgical intervention in patients with epilepsy. Although the negative effects of epilepsy on HRQOL are well described in the literature [3], [14], [23], [24], [29], [36], the number of studies evaluating the influence of multiple socio-demographic and clinical factors on HRQOL in patients with epilepsy is limited [2], [10], [15], [34]. Recently, such studies were performed in Greece [40], Turkey [45]), Czech Republic [53], and China [60].

Additionally, only some selective variables are the focus of many studies, and the determinative role of the same variables in HRQOL differs according to the study performed [16], [19], [29]. To understand the determinants of HRQOL, a paradigm shift toward multivariate models has been proposed to incorporate both biomedical and psychological variables [50].

The aim of this study was to evaluate socio-demographic and clinical factors influencing the HRQOL as assessed by the QOLIE–31 questionnaire in adult patients with epilepsy in Russian clinical settings.

Section snippets

Patients

Two hundred eight patients with epilepsy were enrolled consecutively from an unselected patient population after presenting to epilepsy services in Moscow and the Moscow region. The patients met the following inclusion criteria: aged 18 or older; with idiopathic, cryptogenic, or symptomatic epilepsy according to ILAE classification; and signed informed consent. The patients were excluded if they had non-epileptic seizures, learning disability, or progressive central nervous system disorders.

Age, gender, and marital status of patients

The mean age of the 208 patients was 31.49 ± 13.20 (mean ± SD) years (from 18 to 74 years). 122 (58.7%) patients were female. Ninety-eight (47.2%) patients were married, 110 (52.8%) were single (separated, divorced, or widowed).

Age of epilepsy onset, duration of epilepsy, and epilepsy syndromes

Duration of epilepsy ranged from 1 to 58 years (12.05 ± 9.69 years), and the mean age at the first unprovoked seizure was 22.68 ± 16.40 (ranged 0.25–70.0 years). The majority of patients (147; 70.7%) had epilepsy for longer than 5 years.

Seventeen (8.2%) patients were classified as

Discussion

The aim of our study was to assess the influence of different clinical and demographic factors on HRQOL in Russian patients with epilepsy. The impact of social and clinical variables (age, sex, marital and employment status, disability, seizure type and frequency, duration of epilepsy, lateralization of epileptic foci, number of AEDs, AEs, and depression) on HRQOL was analyzed.

At first, in univariate analysis, the factors potentially influencing HRQOL in patients with epilepsy were revealed:

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Our findings show that unemployment and work disability are very common among patients with epilepsy, as just 40.5% of the patients in our series were working at the time of the study. This rate is just slightly lower than previously reported rates of 46% and 50% [4,5]. Nonetheless, a Spanish study published in 2011 [6] reported similar employment rates in patients with epilepsy and the general population, possibly because their population had less severe epilepsy than ours (lower percentage of drug-resistant patients and higher monthly seizure frequency).
The impact of epilepsy on work disability remains unclear. The aim of this study was to determine the percentage of patients with epilepsy who are unemployed or on temporary or permanent disability leave and to analyze associated clinical factors.
We performed an observational cross-sectional study of consecutively recruited patients with epilepsy seen at a specialized epilepsy unit or admitted to the epilepsy monitoring unit of a tertiary referral hospital. We analyzed the percentage of patients who were actively employed, unemployed, and on temporary or permanent disability leave. The groups were compared for sociodemographic data (age, sex, marital status, and type of work), clinical data (type of epilepsy, disease duration, monthly seizure frequency, and presence of anxiety or depression), treatment-related factors, and quality of life.
We included 742 patients (53% male, mean age 44.3 ± 13.7 years old): 40.5% were employed, 29.2% were unemployed, 19% were on temporary disability leave, and 11.1% had a permanent work disability. Depressive symptoms and poorer quality of life were associated with unemployment (OR 2.3, p = 0.02 and OR 1.8, p = 0.01), temporary disability leave (OR 1.4, p = 0.05 and OR 1.7, p = 0.02), and permanent work disability (OR 1.9, p = 0.01 and OR 2.2, p = 0.01). Low-skilled work was also predictive of unemployment (OR 1.9, p = 0.04), temporary disability leave (OR 2.8, p = 0.03), and permanent work disability (OR 1.7, p = 0.04). A higher monthly seizure frequency was associated with permanent work disability (OR 2.01, p = 0.02).
Less than 50% of patients with epilepsy in our setting are working. Factors associated with unemployment and work disability are a higher frequency of seizures, low-skilled work, depressive symptoms, and poor quality of life.
Quality of life and stigma in Lebanese people with epilepsy taking medication
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Epilepsy is among the more stigmatising diseases, leading to a negative impact on the quality of life (QoL) of people with epilepsy (PWE). Assessment of the QoL and stigma in PWE reflects the outcome of their disease, and the findings can be used to improve the management of epilepsy. To fill a gap in the literature, our primary aim is to evaluate the QoL and stigma in Lebanese PWE, and our secondary aim is to identify factors affecting these parameters.
A cross-sectional study was conducted for 1 year in Greater Beirut. PWE were interviewed by using a standardised questionnaire. QoL was evaluated by the QoL in Epilepsy Inventory-10 (QOLIE-10), and the stigma was evaluated by the Jacoby scale. Multivariate analyses were used to identify the factors associated with QoL and stigma.
The sample was 404 PWE. More than half of the PWE (61.4 %) had a better QoL than the other PWE (mean QOLIE-10 score of 26.9 ± 11.3), and 47.8 % of PWE felt stigmatised. Linear regression showed that presence of psychiatric comorbidities (p = 0.03), stigma (p < 0.001), experiencing side effects (p = 0.001), polytherapy (p = 0.002), living in a northern area (p = 0.003), and older age (p = 0.004) were the major factors associated with a poor QoL. Logistic regression showed that a low level of QoL (p = 0.005) and experiencing side effects (p = 0.045) were associated with a high level of stigma.
An appropriate treatment based on a monotherapy can reduce the risk of side effects, improving QoL of PWE, and decreasing stigma. Furthermore, the management of depression by specialists is an essential step to improve the QoL of Lebanese PWE. Education programmes and information on epilepsy and treatment also play a major role in reducing stigma.
Factors affecting quality of life in Hungarian adults with epilepsy: A comparison of four psychiatric instruments
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We investigated the impact of 19 factors on life quality in Hungarian patients with epilepsy. Wellbeing was evaluated by several inventories to investigate the impact of factors in more detail.
A cross-sectional study was performed in 170 patients. Wellbeing was evaluated with the WHO-5 Well-being Index (WHOQOL-5), Diener Satisfaction with Life Scale (SwLS), and the Quality of Life in Epilepsy-31 Questionnaire (Qolie-31). We investigated their association with demographic characteristics, general health status, epilepsy, and its treatment. The impact of these factors on illness perception (Illness Perception Questionnaire, IPQ) was also studied.
The four measures correlated highly significantly. In addition, the predictive power of factors was comparable with the four inventories as evaluated by Multiple Regression. Factors explained 52%, 41%, 63% and 46% in the variance of WHOQOL-5, SwLS, Qolie-31, and IPQ scores, respectively. However, associations with particular factors were instrument-specific. The WHOQOL-5 was associated with factors indicative of general health. SwLS scores were associated with health-related and several demographic factors. Neither showed associations with epilepsy-related factors. All four categories of factors were associated with Qolie-31 and IPQ scores. Factors had an additive impact on IPQ, but not on Qolie-31.
Our findings reveal interactions between the method of life quality assessment and the factors that are identified as influencing life quality. This appears to be the first study that analyses the factors that influence illness perception in epilepsy patients, and suggests that the IPQ may become a valuable tool in epilepsy research.
The experience of living with adult-onset epilepsy
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The incidence and prevalence of adults diagnosed with epilepsy is higher compared to those diagnosed in childhood, yet the experience of living with adult-onset epilepsy has rarely been examined. Hence, the current study took a phenomenological approach to examining the experience of living with epilepsy following diagnosis in adulthood. Semi-structured interviews were conducted with 39 people from across the UK, diagnosed with epilepsy between the ages of eighteen and sixty, at two points in time, six months apart. Phenomenological analysis identified three central themes: the unpredictability of seizure occurrence; the ripple effect; and re-evaluating the future. Despite the accepted consensus in the epilepsy literature that living and coping with epilepsy becomes more difficult the older a person is diagnosed, the current findings indicated that this is inadequate. Rather, it is more suitable to consider that those living with adult-onset epilepsy have a specific experience of the condition and particular support needs, given that they once lived their lives as people without epilepsy.
Attitudes towards people with epilepsy in Moscow
2017, Epilepsy and Behavior
To assess the knowledge and attitudes in Moscow towards people with epilepsy (PWE).
Data were collected from 1167 adults, permanent residents of Moscow, who were interviewed. A 10-item questionnaire was used addressing three major domains: familiarity with epilepsy (2 questions), understanding of epilepsy (5 questions), and attitude towards the PWE (3 questions). Results were standardized to the Moscow population.
The study population was generally well informed about epilepsy. About 80% “has heard” of epilepsy; however, personal acquaintance with PWE was reported by less than half of the study participants. The level of understanding of the disease and its etiology was quite low. About 60% of the survey participants believed that epilepsy was a type of mental retardation. One-third (34%) of respondents were afraid to stay in the proximity of PWE. Only 38% of the survey participants considered epilepsy to be curable; men significantly less frequently than women. Overall, the level of understanding of epilepsy was proportional to the level of education of respondents.
Negative attitudes towards PWE were demonstrated in a significant part of the population. Almost half of the respondents would object to their child playing or studying with a child who has epilepsy and more than half (57%) were against the marriage of their daughter or son to a person with epilepsy. Two-fifths of the respondents ranked epilepsy as the “least preferred” of the six chronic diseases for a colleague.
This is the first study on awareness and attitudes to PWE in the adult population of Moscow. The study demonstrated that the general public is familiar with epilepsy, but has a rather low level of understanding of essential aspects of the disease. There is an overall high level of negative attitudes towards PWE in Russia, creating a need for targeted interventions. These results reinforced the importance of public education in reducing the stigma of epilepsy.
Quality of life in epilepsy—31 inventory (QOLIE-31) scores: A global comparison
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Quality of life is a pragmatic endpoint for understanding the experience of people with epilepsy (PWE) in low- and middle-income countries (LMICs), where > 80% of PWE reside. However, the literature is bereft of QOL in epilepsy (QOLIE) studies among LMICs and knowledge of the variation in QOLIE globally. We therefore performed a Medline search of original research studies using the quality of life in epilepsy—31 inventory (QOLIE-31) in a recent fifteen-year period (2000–2015). Each of the 194 countries listed by the World Health Organization (WHO) was individually included as search terms. Differences in QOLIE were tested across WHO world regions and World Bank country income group classifications. Sixteen percent of all countries (n = 31) reported on 7255 individuals, including only 8 LMICs. The global mean QOLIE-31 score was 59.8 (standard deviation (SD): 8.0), with a range from 42.1 (SD: 4.1) in the Russian Federation to 82 (SD: 32.8) in Canada. There was a statistically significant difference seen in the QOLIE-31 score by world region and income category, with lower country income level associated with worse QOL (test for trend, p < 0.0001). There exists substantial global variation in QOLIE, and country income level may play a role. Understanding what contributes to international differences in QOLIE can help reduce disparities in QOL among PWE worldwide.

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Health-related quality of life in Russian adults with epilepsy: The effect of socio-demographic and clinical factors

Abstract

Objective

Methods

Results

Conclusion

Highlights

Introduction

Section snippets

Patients

Age, gender, and marital status of patients

Age of epilepsy onset, duration of epilepsy, and epilepsy syndromes

Discussion

Epilepsy Behav

Epilepsy Res

Clin Psychol Rev

Epilepsy Behav

Epilepsy Behav

Epilepsy Behav

Epilepsy Res

Epilepsy Behav

Seizure

Epilepsy Res

Biomed Environ Sci

Soc Sci Med

Epilepsy Behav

Epilepsy Behav

Seizure

Epilepsy Behav

Epilepsy Behav

Seizure

Epilepsy Behav

Seizure

Epilepsy Behav

Epilepsy Behav

Epilepsy Behav

Epilepsy Behav

Epilepsy Behav

Epilepsy Behav

Epilepsy Behav

Assessment of quality of life in people with epilepsy: some practical implications

Epilepsia

Assessment of depression: the depression inventory

Seizure reduction and quality of life improvements in people with epilepsy

Epilepsia