Female sexual function mediates the effects of medication adherence on quality of life in people with epilepsy

PurposeThe purpose of this study was to understand the mediating effects of female sexual functioning in the association between medication adherence and quality of life (QoL) in Iranian women with epilepsy (WWE).MethodsWomen's sexual functioning was measured using Female Sexual Function Index; QoL using Quality of Life in Epilepsy; epilepsy severity using Liverpool Seizure Severity Scale; subjective medication adherence using Medication Adherence Report Scale; and objective medication adherence using serum level for antiepileptic drugs in 567 WWE. Medication adherence was measured at baseline, while women's sexual functioning, QoL, and epilepsy severity were measured at the 6-month follow-up. Structural equation modeling and regression models were conducted to examine the mediating role of women's sexual functioning.ResultsThe mediating effects of sexual functioning in the relationship between medication adherence (including subjective and objective measures) and QoL were supported in the total score of Female Sexual Function Index (coefficient = 0.415, SE = 0.117, p < 0.001 for subjective medication adherence; coefficient = 1.980, SE = 0.446, p < 0.001 for objective medication adherence). Seizure severity was significantly associated with QoL but only when objective medication adherence was measured (coefficient = − 0.094, SE = 0.036, p = 0.009).ConclusionOur results extended the importance of medication adherence from symptom reduction to the beneficial effects of women's sexual functioning and QoL. Health care providers should be aware of these additional benefits of medication adherence and use these arguments to encourage female patients to take their medication, which can eventually increase their sexual satisfaction and overall QoL.     

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

ObjectiveThe 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.MethodsThe 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).ResultsIn 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.ConclusionThe 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.     

A controlled trial of transcutaneous vagus nerve stimulation for the treatment of pharmacoresistant epilepsy

This study explored the efficacy and safety of transcutaneous vagus nerve stimulation (t-VNS) in patients with pharmacoresistant epilepsy. A total of 60 patients were randomly divided into two groups based on the stimulation zone: the Ramsay-Hunt zone (treatment group) and the earlobe (control group). Before and after the 12-month treatment period, all patients completed the Self-Rating Anxiety Scale (SAS), the Self-Rating Depression Scale (SDS), the Liverpool Seizure Severity Scale (LSSS), and the Quality of Life in Epilepsy Inventory (QOLIE-31). Seizure frequency was determined according to the patient's seizure diary. During our study, the antiepileptic drugs were maintained at a constant level in all subjects. After 12 months, the monthly seizure frequency was lower in the treatment group than in the control group (8.0 to 4.0; P = 0.003). This reduction in seizure frequency was correlated with seizure frequency at baseline and duration of epilepsy (both P > 0.05). Additionally, all patients showed improved SAS, SDS, LSSS, and QOLIE-31 scores that were not correlated with a reduction in seizure frequency. The side effects in the treatment group were dizziness (1 case) and daytime drowsiness (3 cases), which could be relieved by reducing the stimulation intensity. In the control group, compared with baseline, there were no significant changes in seizure frequency (P = 0.397), SAS, SDS, LESS, or QOLIE-31. There were also no complications in this group.     

Evaluating quality of life in epilepsy: The role of screening for adverse drug effects,depression, and anxiety

ObjectiveThe objective of this study was to evaluate the contribution of validated screening tools for antiepileptic drug (AED) adverse effects, depression, and anxiety to measure the quality of life (QoL) in people with epilepsy (PWE).MethodsPatients in a tertiary epilepsy service were screened for quality of life (using QOLIE-31), major depressive disorder (MDD) (NDDI-E), generalized anxiety disorder (GAD) (GAD-7), and AED effects (AEP). Mini International Neuropsychiatric Interview (MINI) generalized anxiety disorder module was also performed. For AEP validation in French, the internal structural validity was analyzed. Dimensional (NDDI-E and GAD-7 scores) and categorical (MDD and GAD) analyses were performed to investigate interactions between QoL and AEP.ResultsA total of 132 (87 females) subjects were included. The French version of the AEP demonstrated satisfactory psychometric properties (Cronbach's α 0.87). Correlations between NDDI-E, GAD-7, AEP, and QOLIE-31 scores were high, and significant for all subscales of QOLIE-31; no effect of seizure-related variables was seen. Some sex differences in QOLIE-31 subscales were found, and mean AEP score was higher in females. Age, sex, NDDI-E, GAD-7, and AEP scores accounted for 61% of variance of QOLIE-31 scores. Differential effects were seen on QOLIE-31 subscales: AEP strongly correlated with all subscales; GAD-7 scores more strongly correlated with “Seizure Worry”; NDDI-E with “Energy-Fatigue”; and both NDDI-E and GAD-7 scores strongly correlated with “Emotional Well-Being”. Categorical analysis of groups with MDD alone, GAD alone, MDD + GAD, and neither MDD nor GAD showed significant differences in AEP and QOLIE-31 scores, with MDD + GAD showing the most AED effects and the poorest QoL.SignificanceThe combination of screening tools for depression (NDDI-E), anxiety (GAD-7), and AED effects (AEP) has a strong power for evaluating QoL in PWE. Coexisting MMD and GAD were associated with the poorest quality of life and the highest AEP scores.     

Physical activity,stigma, and quality of life in patients with epilepsy

Indication of physical activity (PA) for people with epilepsy (PWE) is debatable. This study investigated whether the International Physical Activity Questionnaire (IPAQ) score is related to the clinical aspects of epilepsy, QOLIE-31, and the Stigma Scale of Epilepsy (SSE) score of 67 PWE at a significance level of 5% (p < 0.05).About one-third (32.8%) of the PWE were sedentary/irregularly active. Lower QOLIE-31 scores and higher SSE scores were found in PWE who did not practice PA for fear of seizures and in sedentary/irregularly active PWE. Twenty-three percent of the PWE stopped practicing PA for fear of seizures. The predictive factors in the logistic regression equation for not practicing physical activity for fear of seizures were the presence of depressive disorder (p = 0.049) and temporal lobe epilepsy with hippocampal sclerosis (TLE-HS) (p = 0.024).Most PWE are sedentary and do not practice PA for fear of seizures. Physical activity is negatively influenced by clinical aspects of epilepsy. Less PA is associated with depressive disorder, worse quality of life, and higher perception of stigma.     

Predictors of quality of life and their interrelations in Korean people with epilepsy: A MEPSY study

PurposePeople with epilepsy (PWE) are more likely to have impaired quality of life (QOL) than the general population. We studied predictors of QOL and their interrelations in Korean PWE.MethodsSubjects who consecutively visited outpatient clinics in four tertiary hospitals and one secondary care hospital were enrolled. These subjects completed the Korean version of the Neurological Disorders Depression Inventory for Epilepsy (K-NDDI-E), the Generalized Anxiety Disorder-7 (GAD-7), the Quality of Life in Epilepsy-10 (QOLIE-10), and the Korean version of Liverpool Adverse Event Profile (K-LAEP). We evaluated the predictors of QOL by multiple regression analyses and verified the interrelations between the variables using a structural equation model.ResultsA total of 702 PWE were eligible for the study. The strongest predictor of the overall QOLIE-10 score was the K-LAEP score (β = −0.375, p < 0.001), followed by the K-NDDI-E score (β = −0.316, p < 0.001), seizure control (β = −0.152, p < 0.001), household income (β = −0.375, p < 0.001), and GAD-7 score (β = −0.119, p = 0.005). These variables explained 68.7% of the variance in the overall QOLIE-31 score. Depression and seizure control had a bidirectional relationship and exerted direct effects on QOL. These factors also exerted indirect effects on QOL by provoking adverse effects of AEDs. Anxiety did not have a direct effect on QOL; it had only indirect effect through the adverse effects of AEDs.ConclusionDepression, anxiety, seizure control, and adverse effects of AEDs have complex interrelations that determine the QOL of PWE.     

Effects of seizure severity and seizure freedom on the health-related quality of life of an African population of people with epilepsy

PurposeThis study aimed at determining the effects of seizure severity and seizure freedom on health-related quality of life (HRQOL) of people with epilepsy (PWE) in the presence of perceived stigma in a sub-Saharan African culture.MethodsHealth-related quality of life was assessed using QOLIE-31 in 93 consecutive adults (56 males and 37 females) with epilepsy. They were stratified into seizure-free, low–moderate seizure severity, and high seizure severity groups based on the seizure type and the number of seizures in the previous 6 months. Other illness variables and sociodemographic variables were also obtained. A 3-item perceived stigma scale was administered. A modified QOLIE-31 (excluding the epilepsy-specific items) was given to 102 age- and sex-matched healthy controls.ResultsThere was moderate negative correlation between seizure severity and mean total HRQOL score as well as scores on the Seizure Worry (p = .000), Overall Quality of Life (p = .000), and Social Function (p = .001) subscales of QOLIE-31. Overall, the healthy control subjects had a higher mean HRQOL score compared with the PWE put together (71.0 + 11.1 vs 64.2 ± 13.6, p = .001). However, there was no difference in the mean HRQOL score between the seizure-free individuals and the healthy controls (p = .270). Seizure severity was associated with HRQOL independent of perceived stigma on a multiple regression analysis.ConclusionThis study provides evidence that seizure severity relates to health-related quality of life in an inverse, graded manner and independent of perceived stigma. Seizure-free people with epilepsy can have quality of life comparable with healthy individuals.     

Differences in quality of life of women and men with drug-resistant epilepsy in Poland

PurposeThe aim of the study was to assess the differences in health-related quality of life in groups of men and women suffering with drug-resistant epilepsy and to determine which factors influence quality of life.MethodsThe examined group consisted of 64 subjects with drug-resistant epilepsy — 31 men and 33 women. The mean duration of epilepsy was 17.56 ± 8.92 and 19 ± 9.56 years, respectively. The following diagnostic tools were used: QOLIE-31-P, Wechsler Adult Intelligence Scale — Revised (WAIS-R (PL)), and Hamilton Rating Scale for Depression (HRSD).ResultsScores in QOLIE-31-P did not differ significantly between groups of men and women with drug-resistant epilepsy; however, a more detailed analysis revealed certain disparities. Multiple regression analyses indicated that some distinct factors were associated with quality of life in each sex. In the group of women, there were no significant predictors of their quality of life. Among the group of men, depression intensity was the only statistically significant QoL predictor, explaining 16% of the variance (adjusted R² = 0.16, F(6, 24) = 19.7, p < 0.01). Moreover, patients with depression had lowered scores in the Emotional Well-Being and Energy/Fatigue subscales, regardless of the sex.ConclusionThe study revealed that, despite similar scores in QOLIE-31-P, specific factors may differentially affect the quality of life of men and women with drug-resistant epilepsy in Poland. Nevertheless, replication of these results with a larger number of participants is needed for a more definitive conclusion.     

The effect of recurrent seizures on cognitive,behavioral, and quality-of-life outcomes after 12 months of monotherapy in adults with newly diagnosed or previously untreated partial epilepsy

PurposeThe purpose of this study was to determine whether seizure recurrence has a negative impact on cognition, psychological function, and health-related quality of life (HRQoL) over a 12-month period of monotherapy in adults with newly diagnosed or previously untreated partial epilepsy.MethodsSeizure freedom (SF) was defined as no seizure recurrence during the 40-week maintenance period of medication. Neuropsychological tests, the Symptom Checklist—90 (SCL-90), and the Quality of Life in Epilepsy—31 (QOLIE-31) were administered at baseline and after 48 weeks of carbamazepine or lamotrigine monotherapy. Seventy-three patients successfully continued treatment until the 48-week follow-up time point. Fifty patients (68.5%) had SF, and the remaining 23 were not seizure-free (NSF). A seizure outcome group-by-time interaction was analyzed using a linear mixed model.ResultsA group-by-time interaction was identified for the total QOLIE-31 score (p < 0.05) and score on two QOLIE-31 subscales (social function: p < 0.001 and seizure worry: p < 0.001), with a significant improvement over time only present in the SF group (all p < 0.001). There was no significant group-by-time interaction for most cognitive function tests, with the exception of the serial clustering score (p < 0.01) and number of recognition hits on the California Verbal Learning Test (p < 0.05). Serial clustering did not differ between the SF and NSF groups at baseline, but was significantly more used in the NSF group than in the SF group at 48 weeks (p < 0.01). There was no significant group-by-time interaction for any dimension of the SCL-90.ConclusionRecurrent seizures had a significant effect on HRQoL, a subtle effect on cognitive performance, and no effect on psychological symptoms over one year in newly diagnosed or previously untreated adults with partial epilepsy.     

Medication prescribing and patient-reported outcome measures in people with epilepsy in Bhutan

ObjectiveThe aim of this study was to assess medication prescribing and patient-reported outcomes among people with epilepsy (PWE) in Bhutan and introduce criteria for evaluating unmet epilepsy care needs, particularly in resource-limited settings.MethodsPeople with epilepsy in Bhutan (National Referral Hospital, 2014–2015) completed a questionnaire, the Quality of Life in Epilepsy Inventory (QOLIE-31), and an electroencephalogram (EEG). Management gap was the proportion of participants meeting any of six prespecified criteria based on best practices and the National Institute for Health and Care Excellence (NICE) guidelines.ResultsAmong 253 participants (53% female, median: 24 years), 93% (n = 235) were treated with antiepileptic drugs (AEDs). Seventy-two percent (n = 183) had active epilepsy (≥ 1 seizure in the prior year). At least one criterion was met by 55% (n = 138) of participants, whereas the treatment gap encompassed only 5% (n = 13). The criteria were the following: 1. Among 18 participants taking no AED, 72% (n = 13) had active epilepsy. 2. Among 26 adults on subtherapeutic monotherapy, 46% (n = 12) had active epilepsy. 3. Among 48 participants reporting staring spells, 56% (n = 27) were treated with carbamazepine or phenytoin. 4. Among 101 female participants aged 14–40 years, 23% (n = 23) were treated with sodium valproate. 5. Among 67 participants reporting seizure-related injuries, 87% (n = 58) had active epilepsy. 6. Among 111 participants with a QOLIE-31 score below 50/100, 77% (n = 86) had active epilepsy. Years since first AED treatment (odds ratio: 1.07, 95% CI: 1.03, 1.12) and epileptiform discharges on EEG (odds ratio: 1.95, 95% CI: 1.15, 3.29) were significantly associated with more criteria met.ConclusionsBy defining the management gap, subpopulations at greatest need for targeted interventions may be prioritized, including those already taking AEDs.     

Effects of religiosity and religious coping on medication adherence and quality of life among people with epilepsy

The epidemiologic information demonstrates the importance of caring people with epilepsy (PWE). Indeed, the impaired quality of life (QoL) and medication nonadherence rate among PWE have been reported. However, religiosity and religious coping could be potential factors for clinicians to foster appropriate intervention on epileptic care. This study investigated two models to further understand the relationships between religiosity, religious coping (including positive and negative coping), medication adherence, and QoL in an Iranian sample with epilepsy. Eligible PWE (n = 760) completed the religiosity scale (Duke University Religion Index; DUREL) at baseline; the religious coping scale (Brief Religious Coping Scale; Brief RCOPE) one month later; the medication adherence scale (Medication Adherence Report Scale; MARS-5) two months later; and the QoL scale (Quality of Life in Epilepsy; QOLIE-31) twelve months later. Their antiepileptic drug serum level was measured during the period they completed the MARS. Through structural equation modeling (SEM), we found that religiosity directly correlated with negative religious coping and medication adherence, and indirectly correlated with medication adherence through negative religious coping. Both positive and negative religious coping directly correlated with medication adherence and QoL. Therefore, religiosity and religious coping may be determinants of medication adherence and QoL in PWE; health professionals may consider asking PWE if religion is important to them and how they use it to cope with their epilepsy.     

Psychometric evaluation of the Serbian version of the Quality of Life in Epilepsy Inventory-31 (QOLIE-31)

PurposeTo evaluate the psychometric properties of the Serbian-language version of the Quality of Life in Epilepsy Inventory-31 (QOLIE-31).MethodsAfter undergoing a translation and cultural adaptation of its items in order to create a Serbian-language version of QOLIE-31, we assessed its psychometric properties—reliability, construct validity and criterion validity. The sample consisted of 203 adults with epilepsy. Reliability was tested both by assessing the internal consistency and by the test–retest method. Construct validity was assessed by factor analysis, multitrait-scaling analysis and method of known-groups validation. This was achieved by assessing the relationship between scales and external measures (socio-demographic characteristics, seizure severity and etiology of epilepsy). Criterion validity was assessed by correlation analysis between QOLIE-31 and Short form 36 health survey (SF-36) and Neurotoxicity scale-II.ResultsThe domains showed high internal consistency (Cronbach's α 0.94). Test–retest reliability for Overall test score was 0.83 (Pearson's coefficient) indicating temporal stability. Seizure severity and etiology of epilepsy significantly influenced all QOLIE-31 domains except the Medication effect domain, with lowest scores in high seizure severity and symptomatic etiology groups. Employment status significantly influenced Overall quality of life, Emotional well-being, Social function and Overall score. Educational level was related to the Emotional well-being domain, with highest scores for students. The QOLIE-31 was highly positively correlated with SF-36 (rho = 0.898) and strongly negatively correlated with Neurotoxicity scale-II (rho = ?0.783).ConclusionSerbian adaptation of the QOLIE-31 questionnaire is reliable and valid for assessing the quality of life in patients with epilepsy.     

Determinants of quality of life in people with epilepsy in Serbia

PurposeThis study aimed at finding determinants of quality of life in people with epilepsy (PWE) living in Belgrade, Serbia.MethodIn this study, we recruited consecutive adults with epilepsy attending our outpatient department. Adult patients (age range: 18–65 years) of normal intelligence and without any progressive neurological disease or psychiatric disorder were included in the study. They completed the following questionnaires: QOLIE-31 Inventory (Serbian version), Beck's Depression Inventory-II, Beck's Anxiety Inventory, Symptom Check List-90, and Neurotoxicity Scale-II. Hierarchical multiple regression analysis was performed to assess the predictive effects of some factors on QOLIE-31 Inventory.ResultsThe mean QOLIE-31 score of 203 patients who completed the questionnaires was 70.64 ± 17.74. Sociodemographic factors (age, sex, education, and employment) did not significantly predict QOLIE-31 score. Significant determinants of quality of life were clinical characteristics – seizure severity and etiology of epilepsy – accounting for 30.9% of the variance, depressive and anxiety symptoms accounting for 42.8% of the variance, and cognitive effects of antiepileptic drugs, accounting for 1.5% above other variables.ConclusionsThe results suggest that seizure severity and etiology of epilepsy, depressive and anxiety symptoms, and cognitive adverse medication effects are main determinants of quality of life in this population of PWE.     

Is antiepileptic drug withdrawal status related to quality of life in seizure-free adult patients with epilepsy?

PurposeThis study aimed to determine factors that influence the quality of life (QOL) of seizure-free adult patients with epilepsy in western China and address whether these determinants vary by antiepileptic drug (AED) withdrawal.MethodsA cross-sectional study was conducted in the epilepsy outpatient clinic of West China Hospital, Sichuan University. Patients with epilepsy who were aged at least 18 years and seizure-free for at least 12 months were interviewed using the Quality of Life in Epilepsy Inventory-31 (QOLIE-31); the National Hospital Seizure Severity Scale (NHS3); the Liverpool Adverse Events Profile (LAEP); the Social Support Rating Scale (SSRS); the Family Adaptation, Partnership, Growth, Affection, and Resolve (APGAR) Questionnaire; and the Scale of Knowledge and Attitudes Toward Epilepsy. Eligible patients were divided into two groups: the nonwithdrawal group and the withdrawal group. The independent-samples t-test was used to compare the QOL between the groups, and linear regression analysis was used to explain the variance of their QOL.ResultsOne hundred and eighty-seven (135 nonwithdrawal and 52 withdrawal) patients were included in the analysis. The QOLIE-31 overall score of the nonwithdrawal group was lower than that of the withdrawal group (p < 0.01). The LAEP score was the strongest predictor of the QOLIE-31 overall score of all subjects, explaining 26.9% of the variance. The second strongest predictor was the SSRS score, explaining 12.9%, and the other predictors were the NHS3 score (5.2%), education level (2.3%), age (1.5%), and marriage (1.0%). Furthermore, the strongest predictors in the nonwithdrawal group were the LAEP and SSRS scores, while in the withdrawal group, the strongest predictors were stigma scores and employment.ConclusionAmong the seizure-free adult patients with epilepsy, those with AED withdrawal experienced better QOL than those continuing AED treatment. Furthermore, the determinants of QOL varied by AED withdrawal. Individual strategies to optimize QOL should be developed based on these differences.     

To what extent does depression influence quality of life of people with pharmacoresistant epilepsy in Argentina?

IntroductionDepression is the most frequent psychiatric co-morbidity in patients with epilepsy. Lifetime prevalence of depression is reported more frequently in temporal lobe epilepsy and is estimated at 35%. This co-morbidity appears to be related with various mechanisms. The aim of this study was to determine the quality of life (QoL) of patients with pharmacoresistant epilepsy with and without co-morbid depression in an Argentinean population.MethodsPatients admitted to the video-EEG monitoring unit during the period 2010–2013 went through a standardized psychiatric assessment using SCID-I (Structured Clinical Interview for Axis I diagnoses of DSM-IV), BDI II (Beck Depression Inventory) GAF (Global assessment of functioning), and Q LES Q-SF (for quality of life). Patients were divided in two groups: with and without depression (according to DSM-IV). Sociodemographic data, BDI II scores, GAF, and quality of life (QoL) were compared between the two groups. Comparisons were made using Student's t-test and Mann–Whitney U test. Frequency distributions were compared by Chi-square test. Spearman correlation coefficients were determined.ResultsSeventy-seven patients with pharmacoresistant epilepsy were eligible for this study, 41 patients were included in the group with depression (mean BDI II 15.93), and 36 in the group without depression (mean BDI II 3.36) (p = 0.001). The overall QoL was significantly lower in the group with depression compared to the group without depression (p < 0.01). The most affected areas were: physical health (p = 0.013), mood (p = 0.006), course activities (referring to school as well as to hobbies or classes outside of school) (p = 0.003), leisure time activities (p = 0.011), social activities (p = 0.047), general activities (p = 0.042), and medication (p = 0.022). Severity of depression according to BDI II had a negative correlation with overall QoL (r - 0.339, p < 0.01). No correlations were found between seizure frequency, QoL and BDI II.ConclusionPatients with pharmacoresistant epilepsy and co-morbid depression reported worst QoL. Depression disrupts daily functioning (leisure, social functioning) and is a negative influence for subjective perception of health and medication. Interdisciplinary treatment should be considered (neurology–psychiatry–psychotherapy).     

Effect of motivational interviewing on quality of life in patients with epilepsy

ObjectiveIn this study, the effect of motivational interviewing on quality of life was evaluated in patients with epilepsy.MethodsFifty-six patients with epilepsy in a clinical trial were randomly assigned to intervention and control groups. Motivational interviewing during 5 sessions was applied for the intervention group, and the control group received health-care services. Quality-of-life questionnaire in epilepsy (QOLIE-89) was applied as pre- and posttest for both groups. Before and two months after intervention, both groups were assessed. Data were analyzed by independent t-test, Chi-square test, and paired t-test.ResultsThe data analysis showed that mean score of the QOLIE-89 was 38.94 ± 8.55 and 70.90 ± 7.99 in the intervention group before and after the intervention, respectfully, and 44.59 ± 12.27 and 36.52 ± 7.16 in the control group sequentially. The intervention group showed a significant score increase in their quality of life (p < 0.001), whereas the control group had a score decrease (p < 0.001).ConclusionMotivational interviewing approach could be used as an effective intervention method for improving patients' quality of life.     

Quality of life in epilepsy—31 inventory (QOLIE-31) scores: A global comparison

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.     

PatientsLikeMe® Online Epilepsy Community: Patient characteristics and predictors of poor health-related quality of life

ObjectiveThe online PatientsLikeMe® Epilepsy Community allows patients with epilepsy to record, monitor, and share their demographic, disease, and treatment characteristics, providing valuable insights into patient perceptions and understanding of epilepsy. The objective of this retrospective analysis was to characterize the profile of users and their disease and identify factors predictive of poor health-related quality of life (HRQoL), while assessing the platform's potential in providing patient-reported data for research purposes.MethodsData recorded (January 2010–November 2011) by Epilepsy Community members, with an epilepsy diagnosis and who reported > 1 seizure, included the following: sociodemographic and disease characteristics, treatments, symptoms, side effects perceived as medication-related, seizure occurrence, and standardized questionnaires (Quality of Life in Epilepsy Inventory [QOLIE-31/P], EuroQoL 5-Dimensions Scale, 3 Levels [EQ-5D-3L], and Hospital Anxiety and Depression Scale [HADS]). Univariate and multivariate logistic regressions were conducted to identify predictors of poor HRQoL.ResultsDuring the study period, the Epilepsy Community comprised 3073 patients, of whom 71.5% were female, had a mean age of 37.8 years, and had a mean epilepsy duration of 17.7 years. The most frequently reported moderate/severe symptoms (n = 2135) included memory problems (60.2%), problems concentrating (53.8%), and fatigue (50.0%). Medication-related side effects (n = 639) included somnolence (23.2%), fatigue (17.2%), and memory impairment (13.8%). The QOLIE-31/P scores (n = 1121) were significantly worse in patients who experienced a recent seizure. For QOLIE-31/P, highly predictive factors for poor HRQoL included the following: mild/moderate problems concentrating, depression, memory problems, treatment side effects, occurrence of tonic–clonic seizures, and epilepsy duration ≤ 1 year. For EQ-5D-3L, highly predictive factors for poor HRQoL included the following: pain, depression, and comorbidities. Patients on newer AEDs were less likely to report poor HRQoL (QOLIE-31/P).SignificanceThese findings move further towards supporting the feasibility and usefulness of collecting real-world, anonymized data recorded by patients online. The data provide insights into factors impacting HRQoL, suggesting that a holistic treatment approach beyond seizure control should be considered in epilepsy.     

Impact of stigma on the quality of life of patients with refractory epilepsy

PurposeTo assess the impact of perceived stigma on the quality of life of Bulgarian patients with refractory epilepsy.MethodsWe studied 70 adult patients with refractory epilepsy, without cognitive impairment, progressive somatic, neurological disease or recent seizures, and 70 patients with pharmacosensitive epilepsy. All participants completed a 3-item stigma scale, the patients with refractory epilepsy also completed a Health Related Quality of Life measure (the QOLIE-89).ResultsThe patients with refractory epilepsy had a mean disease duration 25.1 ± 1.3 years. 40.0% of patients (±5.9) had symptomatic epilepsy. Seventeen patients (24.2% ± 5.1) had partial seizures, 16 (22.8% ± 5.0) had generalized seizures and 37 (52.9 ± 6.0) had a mixture of partial and generalized seizures. Most participants had several seizures per week (45.7%) or month (30.0%) despite the fact that 90% were taking combination antiepileptic drug treatment. We found perceived stigma in 43.6% of patients with refractory epilepsy, and 28.7% self-reported severe stigmatization. Only 4 (5.7%) patients with pharmacosensitive epilepsy reported stigmatization which was mild or moderate in all cases. Perceived stigma had a negative impact on the overall score of the QOLIE-89 (T-score 47.8), as well as on all subscales of QOLIE-89, with the exception of “change in health” and “sexual relations”. Patients with refractory epilepsy reporting stigmatization most commonly had very low and low scores on the subscales “health perceptions” (82.9%), “emotional well-being” (71.5%), “memory” (63.4%) and “health discouragement” (62.5%). There was a negative correlation of all QOLIE-89 subscales with perceived stigma severity.ConclusionAll aspects of the quality of life of Bulgarian patients with refractory epilepsy correlate negatively with the severity of perceived stigma.     

Perceived epilepsy stigma mediates relationships between personality and social well-being in a diverse epilepsy population

IntroductionPerceived epilepsy stigma and reduced social well-being are prevalent sources of distress in people with epilepsy (PWE). Yet, research on patient-level correlates of these difficulties is lacking, especially among underserved groups.Materials and methodsRacially/ethnically diverse adults with intractable seizures (N = 60, 62% female; 79% Black, 20% Hispanic/Latino, 8% White) completed validated measures of personality (NEO Five Factor Inventory, NEO-FFI-3), perceived epilepsy stigma (Epilepsy Stigma Scale, ESS), and quality of life (Quality of Life Inventory in Epilepsy, QOLIE-89). Controlling for covariates, ordinary least-squares (OLS) regression evaluated the total, direct, and indirect effects of NEO-FFI-3 neuroticism and extraversion scores on epilepsy-related social well-being (i.e., combination of QOLIE-89 social isolation and work/driving/social function subscales, α = 0.87), mediated through perceived stigma.ResultsIn separate models, higher levels of neuroticism (N) and lower levels of extraversion (E) were significantly and independently associated with greater perceived stigma (N path a = 0.71, p = 0.005; E path a = − 1.10, p < 0.005). Stigma, in turn, was significantly and independently associated with poorer social well-being (N path b = 0.23, p < 0.001; E path b = − 0.23, p < 0.001). Bias-corrected bootstrap confidence intervals (CIs) showed that neuroticism and extraversion were indirectly associated with social well-being through their respective associations with perceived stigma (N path ab = − 0.16, 95% CIs [− 0.347, − 0.044]; E path ab = 0.25, 95% CIs [0.076, 0.493]).ConclusionHigher neuroticism and lower extraversion covaried with stigma beliefs, and these may be markers of poor social outcomes in PWE. Mediation models suggest that targeting epilepsy stigma beliefs may be a particularly useful component to incorporate when developing interventions aimed at promoting social well-being in diverse PWE.