难治性癫

目的了解难治性癫     

难治性癫病人生活质量的调查

目的　了解难治性癫 (IE)病人的生活质量。方法　根据世界卫生组织 (WHO)生活质量内容和标准 ,用通用量表和相关问卷对 4 0 0例IE病人进行调查。结果　发现IE病人中有 92例 (2 3% )因病未完成 9年义务制教育 ;32 3例婚龄青年中有 12 5例 (38 7% )未婚 ,74例 (2 2 9% )病人结婚后离婚 ;317例次出现抗癫药副作用 ;132例出现忧郁表现、12 4例出现癫后精神障碍或谵妄、6 7例有交替性精神病、4 8例有癫样精神分裂症 ;2 4 2例病人在经济上依靠社会或家庭支持。结论　IE病人的生活质量受到疾病的明显影响。     

Predictors of health-related quality of life in patients with epilepsy and psychogenic nonepileptic seizures

Epilepsy and psychogenic nonepileptic seizures (PNES) are associated with reduced health-related quality of life (HRQoL). The present study investigated the profile, relationship, and predictive power of illness perceptions, psychological distress (depression and anxiety), seizure activity, and demographic factors on HRQoL in these patient groups. Patients with epilepsy (n = 62) and PNES (n = 45) were recruited from a United Kingdom hospital and from membership-led organizations for individuals living with seizures. Patients completed a series of self-report questionnaires assessing: anxiety (GAD-7), depression (NDDI-E), illness perceptions (B-IPQ), HRQoL (NEWQOL-6D), and seizure frequency and severity (LSSS-3). Correlational and hierarchical multiple regression analyses were conducted. Patients with epilepsy reported higher HRQoL and scored lower on measures of depression and anxiety. Patients with PNES perceived their condition as more threatening overall. In both conditions, HRQoL was negatively correlated with more severe illness perceptions and psychological distress. In epilepsy and PNES, psychological distress (epilepsy: 27%; PNES: 24.8%) and illness perceptions (epilepsy: 23.1%; PNES: 23.3%) accounted for the largest amount of variance in HRQoL. Clinical factors were found not to be significant predictors, while demographic factors predicted HRQoL in epilepsy (12.6%), but not in PNES. Our findings support the notion that psychological factors are a stronger predictor of HRQoL in epilepsy and PNES than condition-related and demographic variables. Prior research suggests that anxiety and depression are key predictors of HRQoL; this study demonstrates that the relationship between illness perceptions and HRQoL is similarly close. These findings highlight the importance of addressing patients' beliefs about their condition.     

Coping style and health-related quality of life in caregivers of epilepsy patients

Epilepsy has a significant impact on health-related quality of life (HRQOL) of patients and personal coping style is an important determinant. Less is known about home caregivers. This study investigates HRQOL and coping style of both patients and caregivers and their interaction. Epilepsy patients attending the outpatient clinic of the University Medical Centre in Utrecht and their caregivers were sent EQ5D and RAND-36 questionnaires. The Utrecht Coping List was used to chart personal coping styles. HRQOL scores of patients and caregivers were compared to the general Dutch population. The association between patient and caregiver HRQOL scores was calculated. A stepwise backward multivariate linear regression analysis was used to explain variances in caregiver HRQOL. Eighty-six couples (49%) returned all questionnaires. Caregiver HRQOL scores were comparable to the general Dutch population (EQ5D: 0.88-0.88; p?=?0.90, RAND-36 MCS: -2 points; p?=?0.16), while patients HRQOL scores were lower (EQ5D: 0.79; p?相似文献   

Acupuncture in intractable epilepsy: lack of effect on health-related quality of life.

The objective of this study was to assess the effect on health-related quality of life of acupuncture and sham acupuncture as adjunctive treatment in intractable epilepsy. We performed a randomized controlled trail with two parallel treatment arms at The National Center for Epilepsy in Norway, a comprehensive epilepsy center. Thirty-four patients with long-standing drug resistant epilepsy completed the study. The intervention consisted of 20 acupuncture treatments (bilateral needling of three acupoints plus one or two individually chosen points) or sham acupuncture (bilateral needling with smaller needles of three points outside the traditional meridians) over 8 weeks. The main outcome measures were changes in mean health-related quality of life scores for the two groups after 8 weeks, using the 89-item Quality of Life in Epilepsy (QOLIE-89) questionnaire. We found no difference between the acupuncture and sham acupuncture groups in score changes in any dimension of the QOLIE-89 questionnaire, despite testing a large number of dimensions. We also found no change in QOLIE-89 scores between baseline and 8 weeks in either groups. In conclusion, we could not demonstrate a significant effect of traditional acupuncture or sham acupuncture on the health-related quality of life of patients with intractable epilepsy.     

Cognition and health-related quality of life in chronic well-controlled patients with partial epilepsy on carbamazepine monotherapy

As a group, patients with epilepsy have reduced neuropsychological functioning and health-related quality of life (HRQOL), but the status of these factors is uncertain in seizure-free patients with seizure onset in adulthood on monotherapy. Nevertheless, some of these patients report neuropsychological problems. We hypothesized that subtle impairments in neuropsychological functioning and HRQOL may be underdiagnosed and related to these problems. Sixteen patients with localization-related epilepsy on monotherapy carbamazepine were compared with 16 age-, gender-, and education-matched healthy controls by means of a standardized neuropsychological screening battery, questionnaires about HRQOL (Short-Form Health Survey, SF-36), self-perceived neuropsychological functioning (Cognitive Failure Questionnaire), and mood (Profile of Mood States). No objective impairments in selective attention, memory, and executive functioning were found. However, a lower speed of information processing affecting everyday life functioning was found. Lower levels of self-perceived neuropsychological functioning were reported, whereas HRQOL was unimpaired relative to healthy controls. Physicians should not be reassured when patients receive adequate medication that prevents seizures; careful follow-up of speed of information processing and self-perceived neuropsychological functioning is needed.     

Cognition and health-related quality of life in a well-defined subgroup of patients with partial epilepsy

To investigate the extent and nature of the objective and subjective cognitive deficits and health-related quality of life (HRQOL) in adult outpatients with relatively well-controlled partial epilepsy without symptomatic aetiology, who were on carbamazepine (CBZ) monotherapy. Furthermore, we studied the influence of the epilepsy history and medication on various cognitive functions and the HRQOL. 56 outpatients (29 male, 27 female, mean age 41.3 years) with partial epilepsy were compared with 56 age-, gender-, and education-matched healthy controls. Patients were tested on attention, memory, speed of information processing, and executive functioning. Questionnaires aimed at measuring self-perceived cognitive functioning (CFQ) and HRQOL (SF-36) were administered. Mann Whitney-U tests were used to compare the two groups. Linear regression analysis was performed to identify the epilepsy and medication-related factors that are associated with cognitive functioning and HRQOL. Patients scored lower on measures of attention (P = 0.03), learning (P = 0.02) and speed of information processing (P = 0.00). Mental aspects of HRQOL such as fatigue were lower (P = 0.00), whereas physical functioning was unaffected. These patients also expressed reductions in mental functioning as indicated by a low self-perceived cognitive functioning (P = 0.01). Age at onset, duration of epilepsy, seizure type, seizure frequency, localisation, years on CBZ, and CBZ dosage were not related to cognitive functioning or HRQOL. Patients with partial epilepsy, even when able to maintain regular jobs, have impaired cognition and HRQOL that cannot be attributed to their epilepsy history or CBZ dosage or years of CBZ intake. Therefore, physicians should be more aware of their cognition and HRQOL, in addition to the antiepileptic drug regime. Received: 16 March 2001, Received in revised form: 10 July 2001, Accepted: 16 July 2001     

Risk factors for poor health-related quality of life in adolescents with epilepsy

PURPOSE: To examine potential risk factors for poor health-related quality of life (HRQOL) among adolescents with epilepsy by using the newly developed QOLIE-AD-48. Risk factors were derived from sociodemographic, social, academic, and epilepsy- and health-related domains. METHODS: The QOLIE-AD-48 was administered to 197 English-speaking adolescents (age 11-17 years from >20 sites in the United States and in Canada). The self-report instrument yields an overall HRQOL score and eight subscale scores. Other data were obtained from family interviews, physician reports, and health records. Multiple regression analyses were conducted to study risk factors for impairment of HRQOL. RESULTS: Older adolescents (age 14-17 years), those with more severe epilepsy and more symptoms of neurotoxicity, and those living in households with lower socioeconomic status were more likely to report poor overall HRQOL. Risk factors in the eight HRQOL domains were found as follows: (a) Epilepsy Impact: older age in adolescence, more severe epilepsy and neurotoxicity, more hospitalizations during the past year, and fewer hours of extracurricular activities; (b) Memory and Concentration: longer duration of epilepsy, special education classes, and history of repeating a grade in school; (c) Attitude Toward Illness: older age, female gender, and more severe epilepsy and neurotoxicity; (d) Social Support: younger age, male gender, and fewer hospitalizations in the last year; (e) Stigma: lower socioeconomic status and special-education classes; and (f) Health Perceptions: older age, female gender, and lower socioeconomic status. None of the factors examined was significantly associated with HRQOL in (g) Physical Functioning or (h) School Behavior subscales. CONCLUSIONS: We identified several risk factors for poor HRQOL outcomes in adolescents with epilepsy. Age, increased seizure severity, and neurotoxicity were most consistently associated with poor HRQOL across domains. Older adolescents, independent of epilepsy severity, reported worse overall HRQOL than did their younger counterparts. Older adolescents also were more likely to perceive a greater negative impact on life and general health, and had more negative attitudes toward epilepsy. Adolescent boys and girls may show different sensitivities to various quality-of-life domains.     

Sociodemographic correlates of health-related quality of life in pediatric epilepsy

In most chronic conditions, better health-related quality of life (HRQOL) is associated with higher socioeconomic status (SES) and ethnic majority status, with disadvantaged groups typically reporting lower HRQOL. In 163 children with intractable epilepsy, we evaluated the relationship between HRQOL and a broad spectrum of demographic variables (SES, parental education, gender, age, marital status, family size, and ethnic and linguistic status), in relation to known neurological and behavioral correlates of HRQOL. No demographic variable was found to be related to child HRQOL, except for marital status, where children from divorced/separated parents had lower HRQOL. However, marital status was not uniquely predictive of HRQOL when neurological and behavioral variables were taken into account. Exploratory analyses indicated that children of separated/divorced parents were more likely to have early epilepsy onset, lower adaptive/developmental levels, and worse seizure frequency, suggesting that severe epilepsy may be a risk factor for marital stress. In sum, contrary to research in other chronic conditions, sociodemographic variables in pediatric epilepsy were weak predictors of HRQOL in comparison to neurological and behavioral variables. The results are discussed with respect to epilepsy-specific determinants of HRQOL.     

Executive function and health-related quality of life in pediatric epilepsy

Children and adolescents with epilepsy often show higher rates of executive functioning deficits and are at an increased risk of diminished health-related quality of life (HRQOL). The purpose of the current study was to determine the extent to which executive dysfunction predicts HRQOL in youth with epilepsy. Data included parental ratings on the Behavior Rating Inventory of Executive Function (BRIEF) and the Quality of Life in Childhood Epilepsy (QOLCE) questionnaire for 130 children and adolescents with epilepsy (mean age = 11 years, 6 months; SD = 3 years, 6 months). Our results identified executive dysfunction in nearly half of the sample (49%). Moderate-to-large correlations were identified between the BRIEF and the QOLCE subscales of well-being, cognition, and behavior. The working memory subscale on the BRIEF emerged as the sole significant predictor of HRQOL. These results underscore the significant role of executive function in pediatric epilepsy. Proactive screening for executive dysfunction to identify those at risk of poor HRQOL is merited, and these results bring to question the potential role of behavioral interventions to improve HRQOL in pediatric epilepsy by specifically treating and/or accommodating for executive deficits.     

Assessment of health-related quality of life and influencing factors using QOLIE-31 in Japanese patients with epilepsy

The aim of epilepsy treatment is not only to eliminate seizures, but also to improve health-related quality of life (HRQOL). We conducted a postal self-administered survey of HRQOL for Japanese patients using the Quality of Life in Epilepsy inventory (QOLIE-31), Version 1.0, and analyzed factors influencing their quality of life (QOL). Data from 599 analyzable patients were evaluated and a number of factors influencing QOL were identified, including severity and frequency of seizures, seizure control, type of epilepsy, contributing events such as injuries and falls during seizures, number of antiepileptic drugs, employment status, and surgical outcome. These findings suggest that comprehensive management of the patient should be emphasized. Consideration of all the results led to classification of these factors as one of two types: “all or nothing” and “linear.” With respect to “all or nothing” factors (e.g. “daytime remarkable seizures”), patients may not be able to improve their QOL unless these factors can be completely controlled. Comparison of each score on the QOLIE-31 subscales with published data revealed that the scores for the subscale Medication Effects were markedly low.     

The influence of fatigue on health-related quality of life in patients with Parkinson's disease

OBJECTIVE: To examine the correlation between fatigue and health-related quality of life (HRQL) in patients with Parkinson's disease (PD). PATIENTS AND METHODS: Sixty-six patients with idiopathic PD. The patients did not have a depressive mood disorder or cognitive impairment. Fatigue was measured by the Fatigue Severity Scale (FSS). HRQL was measured by the Parkinson's Disease Questionnaire (PDQ-39) and the Short-Form 36 (SF-36). RESULTS: Thirty-three (50%) of the patients had significant fatigue. Patients with fatigue had a more advanced disease than those without fatigue, measured by the UPDRS scale, including a higher Hoehn and Yahr stage and lower Schwab and England score. Patients with fatigue reported more distress in the dimensions of emotional well-being and mobility (PDQ-39) and also had a significantly higher PDQ summary index. On the SF-36 patients with fatigue reported more problems in the areas of physical functioning, role limitation (physical), social functioning and vitality. Correlations between the FSS and the HRQL scales were highest for the summary index of PDQ-39 and in the dimensions of ADL, mobility and emotional well-being (PDQ-39) and physical functioning, role limitation (physical), social functioning, general health and vitality (SF-36). CONCLUSIONS: PD has a substantial negative impact on HRQL. We found a strong correlation between fatigue and high distress scores on HRQL scales in a population of patients with PD who were not depressed or demented. The diversity of symptoms and high prevalence of non-motor features, including fatigue, is important to take into account in our efforts to optimize treatment and care for this patient group.     

Validity of three measures of health-related quality of life in children with intractable epilepsy

PURPOSE: Validity studies on health-related quality of life (HRQOL) scales for pediatric epilepsy are few, and cross-validation with other samples has not been reported. This study was designed to assess the validity of three parent-rated measures of HRQOL in pediatric epilepsy: (a) the Impact of Childhood Illness Scale (ICI), (b) the Impact of Child Neurologic Handicap Scale (ICNH), and (c) the Hague Restrictions in Epilepsy Scale (HARCES). METHODS: Retrospective data were examined for 44 children with intractable epilepsy. Validity was assessed by evaluating differences across epilepsy severity groups as well as correlations between HRQOL scales and neurologic variables (seizure severity, epilepsy duration, current/prior antiepileptic medications) and psychosocial measures (emotional functioning, IQ, social skills, adaptive behavior). Scale overlap with a global QOL rating also was assessed. RESULTS: The HRQOL measures were moderately to highly intercorrelated. The scales differed in terms of their associations with criterion measures. The HARCES was related to the highest number of neurologic variables and the ICNH to the fewest. All three scales were related to psychosocial functioning and to global quality of life. CONCLUSIONS: The results of this study suggest that the three measures are likely adequate measures of HRQOL for use in intractable childhood epilepsy. The measures were highly intercorrelated, and they were all broadly related to criterion measures reflecting specific domains of HRQOL as well as global QOL. Some differences between scales emerged, however, that suggest care in choosing HRQOL instruments for children with epilepsy.     

The effect of seizure severity on quality of life in epilepsy

Seizure severity is an important aspect of epilepsy. The relationship between seizure severity and quality of life in epilepsy, however, has been incompletely explored. With a data set of 118 women from the baseline phase of a clinical treatment trial, the relationship between seizure severity and aspects of quality of life was evaluated. Two domains of the Quality of Life in Epilepsy-31 (QOLIE-31) correlated highly significantly with seizure severity: Seizure Worry (r=-0.265, P=.004) and Social Functioning (r=-0.280, P=0.002). Two additional domains were significantly correlated: Overall Quality of Life (r=-0.210, P=0.023) and Cognitive (r=-0.209, P=0.024). When the potentially confounding effect of depression, measured by the Beck Depression Inventory, was controlled for, the regression of seizure severity with QOLIE-31 Seizure Worry remained significant (P=0.006, R(2)=0.153), as did the regression with QOLIE-31 Social Functioning (P=0.002, R(2)=0.184) and the regression with QOLIE-31 Cognitive (P=0.037, R(2)=0.30). These findings indicate that severe and potentially injurious seizure behaviors contribute to anxiety and socially avoidant behavior for persons with intractable epilepsy.     

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.     

Seizure frequency and the health-related quality of life of adults with epilepsy.

OBJECTIVE: To compare the health-related quality of life (HRQL) of a nonsurgical sample of adults with epilepsy with that of age- and gender-equivalent norms, and to analyze the relative importance of seizure frequency, time since last seizure, gender, and comorbidity on HRQL in the epilepsy sample. METHODS: Data were obtained from 139 adults with epilepsy from three US centers and published norms on the Medical Outcomes Study Short-Form 36 (SF-36). Patients were classified according to number of seizures over the prior 4 weeks (zero, one to five, six or more). Bivariate and multivariate modeling was used. RESULTS: HRQL scores for seizure-free patients were similar to the general population. Significant differences between seizure frequency groups were found for seven domains and the physical and mental component summary scales of the SF-36 (p<0.001). No differences were found in bodily pain. The largest differences were in physical role and social functioning, and general health (p<0.001). In the multivariate model, seizure frequency was a significant inverse predictor of HRQL across all domains (p<0.01 to 0.001). Men reported poorer physical function than women (p<0.05), and patients with a comorbid condition had poorer HRQL in the areas of pain (p<0.05) and general health perception (p<0.01). Time since last seizure was not related uniquely to HRQL. CONCLUSIONS: Seizure-free adults can have HRQL levels comparable with those of the general population. As seizure frequency increases, patients report more impaired HRQL, regardless of time since last seizure, gender, and comorbid status. Potential for difficulties in HRQL should be considered in clinical assessment and in evaluating treatment outcomes.     

Psychosocial effects and evaluation of the health-related quality of life in patients suffering from well-controlled epilepsy

Abstract.Purpose: To record the impact of epilepsy on the psychological health and HRQOL of patients suffering from mild epilepsy in a rural area of southeastern Greece.Patients and methods: We studied fifty outpatients suffering from well-controlled uncomplicated epilepsy who experienced from none up to four seizures per year and had the ability to sustain a regular job. We tried to record the psychosocial effects resulting from epilepsy and to evaluate their HRQOL, comparing them to 50 healthy controls with similar demographic characteristics. To patients and controls were given the Short-Form Health Survey (SF-36) and a questionnaire based on the Hamilton and Mandrs depression scales.Results: According to the two depression and anxiety scales used, a mild degree of anxiety and depression was diagnosed but with unimportant statistical difference (p = ns) between patients and healthy controls. Self-perceived HRQOL of patients appeared to be affected,with vitality (p < 0.002), physical (p<0.001) and social functioning (p < 0.003) as the most impaired subscales of the SF-36. The deterioration in their HRQOL was mainly related to the post-diagnosis alteration of their socioeconomic status. As assessed by the multiple regression analyses, none of the disease history and medication-related variables were found to have any influence on the results of the SF-36 subtests.Conclusion: Despite the fact that we studied a relatively small sample of patients with mild epilepsy, our results showed that their HRQOL was obviously affected, while their psychological health remained nearly unaffected.