Determinants of quality of life in people with epilepsy and their gender differences

Improving the patient's quality of life (QOL) is the most important goal of epilepsy management. We performed this study to determine the factors associated with QOL in people with epilepsy and to assess whether there are gender differences in these determinants. Patients were interviewed using the Quality of Life in Epilepsy Inventory-31(QOLIE-31), the Adverse Event Profile (AEP), the Self-Rating Anxiety Scale (SAS), and the Hamilton Depression Rating Scale (HAMD). Two hundred forty-seven patients (152 men, 95 women) were included in the analysis. Among all patients, regressive analyses showed that AEP score was the strongest predictor of the QOLIE-31 overall score, accounting for 10.4% of the variance. The next strongest predictors were the number of currently used antiepileptic drugs (AEDs) (3.6%), the HAMD score (2.5%), and the SAS score (1.2%). Importantly, there were gender differences in these predictors of QOL. The strongest predictors of the QOLIE-31 overall score in women were the AEP score and the number of AEDs. In contrast, the strongest predictors in men were the SAS score, the AEP score and the frequency of seizures. These results indicate that perceived adverse effects of treatments and number of AEDs exerted greater effects on QOL in women, whereas anxiety and seizure-related variables had a stronger impact on QOL among men. Accordingly, it may be necessary to individualize interventions to improve the QOL of people with epilepsy.     

Determinants of quality of life in epilepsy

Although depression is associated with diminished quality of life (QOL) in epilepsy patients, the relative contributions of epilepsy-specific concerns, as well as clinical and cognitive variables of QOL, have not been simultaneously investigated. A comprehensive neuropsychological test battery including the Beck Depression Inventory (BDI), Epilepsy Foundation of America's (EFA) Concerns Index, MMPI-2, QOLIE-89, WAIS-III, and Selective Reminding was administered to 115 epilepsy surgery candidates with normal Full Scale IQs. Linear regression analyses were performed to identify significant predictor combinations of QOLIE-89 total score. Regression analysis demonstrated that depressive symptomatology, whether reflected by the BDI (R2=0.45) or Depression scale of the MMPI-2 (R2=0.36), was a robust individual QOL predictor. Seizure Worry from the EFA Concerns Index was nearly as effective as the BDI in predicting QOLIE-89 (R2=0.42). When the BDI and EFA Concerns Index were combined into the same regression, both factors continued to contribute significantly to the QOLIE-89 total score, with both variables accounting for 61% of the variance. Although patients who developed their seizures at an older age had poorer QOL and patients with higher educational levels reported higher QOL, neither factor was related to QOL after accounting for the effects of psychological variables and epilepsy-related concerns. Although quality of life has multiple determinants, symptoms of depression and seizure worry are the most important factors affecting QOL in patients with intractable epilepsy.     

Determinants of quality of life in people with severe mental illness

OBJECTIVE: The objective of this article was to review some methodological issues in this field and give an overview of empirical research findings with a special focus on factors associated with or affecting subjective quality of life in people with a severe mental illness. METHOD: A selective review of relevant scientific literature on quality of life in severe mental illness was conducted. RESULTS: Subjective quality of life in people with a severe mental illness is only to a lesser extent related to external life conditions. Major determinants are psychopathology, especially symptoms of depression and anxiety, and aspects of the social network. Personality related factors such as self-esteem are also influential. Comparative studies have further shown that patients in community care settings have a better subjective quality of life than patients in hospital settings. CONCLUSION: Efforts to improve subjective quality of life in people with severe mental illness should include a careful monitoring of depressive and anxiety symptoms, and pay particular attention to assessment of and interventions against unmet needs. Further, such interventions should stress a strengthening of the social support of the clients. It is also important to pay attention to mediators of changes in subjective quality of life such as self-esteem, mastery, autonomy, and self-efficacy.     

Seizure reduction and quality of life improvements in people with epilepsy

PURPOSE: Previous research suggests that seizure freedom may be necessary to improve health-related quality of life (HRQOL) for epilepsy surgery patients, but little is known regarding the seizure-frequency reduction needed to improve HRQOL among medically treated individuals. METHODS: With data from 134 adults with refractory complex partial seizures participating in a randomized controlled antiepileptic drug (AED) trial, we compared the change in HRQOL across groups having different levels of change in seizure frequency: 100%, 75-99%, 50-74% reduction, and 0-50% increase or decrease. Changes over time within each seizure-reduction group also were assessed. HRQOL was measured by the QOLIE-31, QOLIE-89, and SF-36. RESULTS: Subjects who became seizure free reported significantly more positive change than those who did not on the QOLIE-31 and QOLIE-89 overall scores, the QOLIE-89 mental health, physical health, and epilepsy-targeted composites, as well as the SF-36 mental health summary score. Changes over time in overall QOLIE-31 and QOLIE-89 scores were significantly more positive for subjects who achieved seizure freedom (i.e., 100% reduction in seizure frequency) than for those who did not. No significant change in QOLIE-31 and QOLIE-89 overall scores was observed for subjects who did not achieve seizure freedom. CONCLUSIONS: In this study, HRQOL improvement occurred primarily among patients who achieved complete seizure freedom. Many AED trials use a 50% seizure-frequency reduction criterion as a trial end point, but measurable impacts of this degree of reduction in seizure frequency on HRQOL in this sample were not observed. These results further support striving for seizure freedom as an epilepsy care goal.     

Factors influencing on quality of life in people with epilepsy.

OBJECTIVES: To assess the influence of different factors on health-related QOL in adults with epilepsy in Moscow, Russia. METHOD: We evaluated quality of life in 242 patients (98 de novo and 144 previously inadequately treated) by using QOLIE-31. Partial cryptogenic or symptomatic epilepsy was diagnosed in 214 patients, in 28-idiopathic generalized epilepsy. Stepwise regression analysis was performed to assess the influence of different factors on QOL. RESULTS: In patients with epilepsy in Russia the total score of QOLIE-31 was rather low-42.13+/-4.14. Relationship of quality of life (total score) and frequency of seizures and duration of disease was analyzed. Frequency of seizures was the most significant parameter related to QOL (R=0.46 with total score). Duration of disease also correlated with QOL score (R=0.24 with total score). Significant but rather weak association (link) between frequency of seizures and almost all of subscales of quality of life was noticed. Duration of epilepsy correlated with less number of subscales: Energy/fatigue, Medication effects, Social functioning, Overall QOL subscales. When factors influencing on QOL were separately analyzed in newly diagnosed and previously treated patients frequency of seizures was the most important parameter in both groups. CONCLUSIONS: Frequency of seizures is the most important factor influencing on QOL in adults with epilepsy (newly diagnosed and previously treated).     

Characteristics associated with quality of life among people with drug-resistant epilepsy

Quality of Life (QoL) is the preferred outcome in non-pharmacological trials, but there is little UK population evidence of QoL in epilepsy. In advance of evaluating an epilepsy self-management course we aimed to describe, among UK participants, what clinical and psycho-social characteristics are associated with QoL. We recruited 404 adults attending specialist clinics, with at least two seizures in the prior year and measured their self-reported seizure frequency, co-morbidity, psychological distress, social characteristics, including self-mastery and stigma, and epilepsy-specific QoL (QOLIE-31-P). Mean age was 42 years, 54% were female, and 75% white. Median time since diagnosis was 18 years, and 69% experienced ≥10 seizures in the prior year. Nearly half (46%) reported additional medical or psychiatric conditions, 54% reported current anxiety and 28% reported current depression symptoms at borderline or case level, with 63% reporting felt stigma. While a maximum QOLIE-31-P score is 100, participants’ mean score was 66, with a wide range (25–99). In order of large to small magnitude: depression, low self-mastery, anxiety, felt stigma, a history of medical and psychiatric comorbidity, low self-reported medication adherence, and greater seizure frequency were associated with low QOLIE-31-P scores. Despite specialist care, UK people with epilepsy and persistent seizures experience low QoL. If QoL is the main outcome in epilepsy trials, developing and evaluating ways to reduce psychological and social disadvantage are likely to be of primary importance. Educational courses may not change QoL, but be one component supporting self-management for people with long-term conditions, like epilepsy.     

Satisfaction with life domains in people with epilepsy

While commonly used quality-of-life instruments assess perceived epilepsy-associated limitations in life domains and formally document patient concerns, less is known of community-dwelling adults with epilepsy about their satisfaction with broader life domains, such as satisfaction with housing, education, neighborhood, ability to help others, and achievement of goals. The purpose of this study was to examine satisfaction with life domains in a representative sample of community-dwelling adults with self-reported epilepsy from the 2008 HealthStyles survey. Following adjustment for sex, age group, race/ethnicity, education, and income, people with epilepsy were more likely to report frustration in the domains of achievement (e.g., dissatisfaction with education and life goals), compromised social interactions (dissatisfaction with family life, friends, and social life), and compromised physical capability (dissatisfaction with health and energy level). Life satisfaction and other well-being domains can supplement health indicators to guide treatment and program services for people with epilepsy to maximize their well-being.     

Depression correlates with quality of life in people with epilepsy independent of the measures used

PurposeA number of studies have suggested that depressed mood is one of the most important predictors of quality of life (QoL) in patients with epilepsy. However, the QoL measure used in previous studies was limited to the Quality of Life in Epilepsy (QOLIE) scales. It could be questioned whether correlation of QOLIE with measures of depression is influenced by the properties of the instruments used rather than being a valid effect. By using visual analogue scales, the current study aimed to clarify whether depression and QoL are truly correlated in patients with epilepsy.MethodsData from a sample of 261 outpatients with epilepsy attending the Epilepsy Clinics of the Atkinson Morley Outpatient Department, St George's Hospital in London, were analyzed. Patients were screened using the European Quality-of-Life scale (EQ-5D-3L) which includes an overall visual analogue score (EQ-VAS), the Emotional Thermometer (ET7), the Beck Depression inventory—II (BDI-II), the Hospital Anxiety and Depression scale (HADS), and the Major Depression inventory (MDI).ResultsDepression was found to significantly correlate with EQ-VAS score with r coefficient ranging from 0.42 to 0.51 and r² coefficients ranging between 0.18 and 0.26. In addition, we identified patients who were depressed according to DSM-IV criteria (MD) and those with atypical forms of depression (AD). The EQ-5D-3L scores in these subjects compared with those without depression (ND) showed a different impact of AD and MD on QoL.ConclusionsThe relationship between depression and QoL in people with epilepsy has been demonstrated to be a robust and valid effect, not a result of potential bias of the specific measures used. However, the strength of the association is influenced by the individual instrument. Atypical or subsyndromic forms of depression are as relevant as DSM-based depression in terms of impact on QoL.     

Affective symptoms and determinants of health-related quality of life in Mexican people with epilepsy

Epilepsy is known to be associated with multiple psychiatric comorbidities, such as depression, sleep-disorders, and anxiety. The objective of this study was to determine the prevalence and impact of affective symptoms over health-related quality of life (QOL) in Mexican people with epilepsy (PWE). We performed a cross-sectional observational study on 73 consecutive PWE and corresponding age- and sex-matched controls. HrQOL was assessed using the QOLIE-10 (QOL in Epilepsy-10) instrument. Clinical and demographic characteristics were recorded, and instruments evaluating depressive/anxiety symptoms, sleep quality, and insomnia were completed. PWE had more depressive/anxiety symptoms when compared with controls. QOLIE-10 scores were significantly inversely correlated with poor sleep quality, insomnia symptoms, depressive/anxiety symptoms, and number of anti-epileptic drugs used, but not with seizure type or number of seizures per month. A poor QOL was independently associated only with anti-epileptic drug polytherapy. PWE are burdened with depressive/anxiety symptoms at alarming rates. The presence of depressive symptoms along with sleep disturbances and more significantly, anti-epileptic drug polytherapy, appears to negatively impact QOL, to a greater degree than short-term seizure control.     

The influence of comorbid depression on quality of life for people with epilepsy

The impact of depression on health-related quality of life (HRQOL) for people with epilepsy was evaluated using a postal survey that assessed HRQOL, depression, and seizure severity (N=501). QOLIE-89 scores were significantly reduced by comorbid depression (all P<0.0001) for all types of seizures. People with predominantly major, partial, and minor seizures had significantly poorer HRQOL if they had mild-moderate or major depression (all P<0.0001). People with any type of recent seizure had significantly poorer HRQOL in all domains than people who were seizure-free for 3 months. Differences between groups by depression category were clinically significant (>12 points). Depression (r=-0.72), seizure bothersomeness (r=-0.54), seizure severity (r=-0.37), and days disabled with seizures (r=-0.65) were significantly correlated with poorer HRQOL in all domains than found for nondepressed patients (all subscales P<0.0001). Clinical depression is significantly associated with poorer HRQOL among people with all types of seizures.     

Family and sexual life in people with epilepsy

Having epilepsy is much more than having seizures. Epilepsy can have a severe negative effect on quality of life, affecting social relationships, academic achievement, housing, employment, and the ability to live and function independently. We undertook a cross-sectional study in a tertiary epilepsy center in Lithuania, aiming to assess the influence of epilepsy and aspects relating to epilepsy (employment, stigma, anxiety) on patients and their families, and to estimate their quality of family life and sexual functioning. We asked patients to complete a questionnaire about their socio-demographic situation, their seizure types and antiepileptic medications, and their quality of family and sexual life. Our results confirmed that epilepsy seriously influences family life. One third of our patients are lonely and half are childless. Epilepsy leads to difficulty in finding a job, especially for men, and unemployment affects their status in the family. People with epilepsy are uncomfortable interacting with those of the opposite sex and tend to conceal their medical condition from their partner. One third have sexual dysfunction, yet only a quarter of them seek professional help. There is a clear need to improve self-confidence and to reduce social stigma in people with epilepsy, and to encourage them to discuss their problems with specialists.     

Self-reported anxiety and sleep problems in people with epilepsy and their association with quality of life

Comorbidities are common in epilepsy, and their role in quality of life (QOL) is receiving increasing scrutiny. Considerable attention has been focused on the role of depression, the most common comorbidity, with rather less attention paid to its frequent concomitant, anxiety, and other conditions known to be at increased prevalence among people with epilepsy (PWE) when compared to the general population. In this paper, we report findings from a UK-based survey in which we examined self-reporting of two common comorbidities, anxiety and sleep problems, factors associated with them, and their role in QOL in people with and without epilepsy.Data were obtained via mailed questionnaires, supplemented by an internet survey, from PWE and age- and gender-matched controls. Based on self-reported symptoms, PWE were at higher risk of anxiety and sleep problems. Contributory factors for anxiety included poorer general health, worry about seizures, and self-reported antiepileptic drug (AED) side effects. Good social support emerged as protective for anxiety in PWE. Nighttime sleep problems were very common even in controls but were further elevated in PWE. Antiepileptic drug adverse events emerged as an important contributory factor for sleep problems. Trait anxiety emerged as significant for defining overall QOL, and its importance over state anxiety supports the notion of anxiety in PWE as a primarily premorbid condition. In contrast, sleep quality was not consistently predictive of QOL. Our study has important implications for clinical management, emphasizing the need for a holistic approach to address wider patient-reported problems as well as any epilepsy-specific ones.     

The impact of epilepsy on the quality of life of people with epilepsy in Zimbabwe: a pilot study.

Epilepsy is a common cause of psychosocial disability and has been perceived to have a profound impact on the social functioning of individuals with epilepsy. In Zimbabwe a combination of developing world economic priorities (with provision of social and health services for disabled people not a major goal) and culturally mediated perceptions of epilepsy as a non-medical and feared stigma may further disadvantage people with epilepsy (PWE) in this respect. In order to assess both the level of psychosocial functioning of individuals with epilepsy and their own perception of it, three groups of people were sampled: attenders at a specialized epilepsy clinic and members of two community-based support groups. All completed a brief quality-of-life questionnaire with activities of daily living added. Those carers present completed the same questionnaire at the time of sampling. The results indicated that 36 of 38 people with epilepsy sampled, and their carers, did not perceive themselves to have sufficient cognitive impairment to interfere with social functioning, work performance or relationships with other as assessed by a subsection of the WHO SIDAM (objective evaluation of cognitive performance) interview. However, an adapted activities of daily Living Questionnaire (ADLQ) showed that three-quarters of carers (and two-thirds of PWE) felt that functioning was mildly to moderately reduced, particularly in the areas of solving daily problems and speed of thinking. One-quarter of PWE experienced problems with relationships to others, just less than one-fifth of PWE reported more than four areas of reduced functioning. Of special interest was the fact that 25 (66%) reported sexual functioning as not applicable, although only four of these were of an age group which is not sexually active (less than 15 years old). In addition one-third of the central Hospital Group reported difficulties with using public transport, but none of the Community Support Group members, implying that the use of Public transport becomes an issue when it is necessary to travel long distances and that PWE curtail their travel but do not necessarily view this as a restriction. The samples chosen were from groups which, compared with PWE as a whole, are likely to include more disabled individuals, because attenders at a specialized epilepsy clinic and members of support groups self-select for more symptomatic epilepsy and a visibility. Therefore the proportion of PWE perceived to have difficulties with ADL in this project is not representative for PWE as a whole. The implications of our study are firstly that there is a significant need for selected groups of PWE in Zimbabwe to receive attention to psychosocial abilities and secondly that there are certain specific areas such as sexual functioning and the use of transport which deserve special attention. A much more detailed inventory of neuro-psychological tests will be of value to plan treatment strategies for those selected by the crude screening instruments used in this project. An important future comparison will be a survey of ADL and psychosocial functioning amongst PWE in rural communities, because it is uncertain whether PWE in rural communities are generally more or less disabled than those in the city.     

Determinants of quality of life after epilepsy surgery: systematic review and evidence summary

We systematically reviewed evidence-based determinants of health-related quality of life (QOL) in adults undergoing epilepsy surgery and assessed the effect of study methods. Medline, Embase, and the Cochrane library (1950-2008) were searched systematically. Two authors independently performed every step of the review. We obtained the proportion of studies reporting statistically significant positive or negative impact on QOL. Of 39 eligible studies, 32 assessed the impact of surgery on QOL and 29 (90.6%) found a significant positive effect. The most prevalent preoperative determinant was psychological function. Seizure freedom was the most prevalent postoperative determinant (80% of studies), followed by antiepileptic drug adverse events, employment status, and psychological function. Psychosocial (95%), physical (91%), and overall QOL (90%) domains improved most frequently, whereas role limitation (63%) and cognition (78%) improved least frequently. Methods, choice of instrument, and time of measurement influenced QOL outcomes and should be carefully chosen in future studies.     

Epilepsy-related stigma in European people with epilepsy: Correlations with health system performance and overall quality of life

We aimed to relate the percentages of encountered epilepsy-related stigma in people with epilepsy with quantitative indicators of the quality of health systems and quality of life by country in Europe. The epilepsy-related stigma percentages were obtained from the largest population-based study in people with epilepsy available. We correlated percentages of people with perceived stigma per European country with data on the country's overall health system performance, health expenditure per capita in international dollars, and the Economist Intelligence Unit's quality-of-life index. We found a nonsignificant trend towards negative correlation between the epilepsy-related stigma percentage and the overall health system performance (r = − 0.16; p = 0.57), the health expenditure per capita in international dollars (r = − 0.24; p = 0.4), and the Economist Intelligence Unit's quality-of-life index (r = − 0.33; p = 0.91). Living in a European country with a better health system performance and higher health expenditure per capita does not necessarily lead to a reduction in perceived epilepsy-related discrimination, unless the public health system invests on awareness programs to increase public knowledge and reduce stigma.     

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.     

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.     

Health-related quality of life in adolescents with well-controlled epilepsy

OBJECTIVE: The purpose of the work described in this article was to evaluate the health-related quality of life (HRQOL) of adolescents with well-controlled epilepsy. METHODS: The Quality of Life in Epilepsy Inventory for Adolescents 48 (QOLIE-AD-48) was completed by 71 subjects with uncomplicated epilepsy who had been seizure-free for more than a year. HRQOL was measured in eight domains: Health Perception, Epilepsy Impact, Memory/Concentration, Physical Functioning, Stigma, Social Support, School Behavior, and Attitudes toward Epilepsy. In addition, antiepileptic drug (AED) therapy and concern over seizures recurring were analyzed in relation to HRQOL. RESULTS: The mean HRQOL total scores were 83.9 for boys and 83.06 for girls. The highest scores were observed in the Physical Functioning and School Behavior domains; the lowest in the Attitudes toward Epilepsy domain. Girls reported more positive perceptions in the Stigma and Social Support domains. Greater intake of AEDs and concern over seizures recurring accounted for poorer HRQOL. CONCLUSIONS: Adolescents with favorable seizure control evaluated their HRQOL as satisfactory. However, they perceived their best adjustment to epilepsy to be in the Physical Functioning and School Behavior domains. AED intake and concern over seizures recurring were predictors of HRQOL in this group.