Factors affecting the quality of life in childhood epilepsy in China

OBJECTIVES: To explore the level of, and factors affecting the quality of life (QOL) in childhood epilepsy in China. SUBJECTS AND METHODS: At the Peking University First Hospital, we consecutively identified 418 parents whose children were with known epilepsy to complete a questionnaire, which included children's demographic characteristics, clinical message of epilepsy, QOL, familial message, parental symptoms of anxiety/depression. RESULTS: Significant (p<0.05) affecting factors of children's quality of life included current educational degree, mental development, age at diagnosis, age at onset, seizure frequency, duration, AED number; parental significant (p<0.05) affecting factors included anxiety, depression and health. On regression analysis, parental anxiety was the most important factor in explaining lower QOL in childhood epilepsy. AEDs, familial economic state, paternal career, seizure frequency were also significant factors. CONCLUSION: Parental anxiety outweighed the physical factors in determining QOL in childhood epilepsy. Recognition of this will be helpful for professionals to treat disease and improve the QOL of childhood epilepsy.     

成年癫痫患者抑郁、焦虑状况及生活质量调查

目的调查成年癫痫患者抑郁、焦虑的患病率及可能的危险因素;评价抑郁及焦虑对癫痫患者生活质量的影响。方法采用Beck抑郁问卷(BDI)、贝克焦虑量表(BAI)及癫痫患者生活质量量表-31(QO-LIE-31中文版),对200例成年癫痫患者的抑郁、焦虑情况及生活质量进行评估。结果在200例癫痫患者中43.5%伴发抑郁,28.5%伴发焦虑,23%伴发抑郁及焦虑。发作频繁、无有薪职业是癫痫患者伴发抑郁的重要危险因素,无有薪职业是癫痫患者伴发焦虑的危险因素。抑郁组及抑郁伴焦虑组的QOLIE-31总分及各项评分均低于非抑郁非焦虑组(P=0.000);焦虑组的QOLIE-31总分(P=0.004)及发作的担忧(P=0.019)、认知功能(P=0.009)方面的得分均低于非抑郁非焦虑组。结论抑郁和焦虑是癫痫患者常见的精神共病,严重影响了癫痫患者的生活质量。积极控制发作、为癫痫患者提供更多的就业机会是改善癫痫患者生活质量的重要因素。     

难治性癫患者的社会质量和生活质量调查

目的评估难治性癫(IE)患者的社会质量和生活质量。方法对60例IE患者及其家属进行访谈,调查其社会质量和生活质量。结果 IE患者的社会质量和生活质量普遍较低,在康复指导、日常生活、心理关怀等方面有很多的需求。结论应该全面关心以改善IE患者的社会和生活质量。     

影响帕金森病患者生活质量的因素

目的探讨影响帕金森病(PD)患者生活质量的因素。方法采用PD生活质量问卷(PDQL)、PD统一评定量表(UPDRS)、Hoehn-Yahr分期、Schwab-England残疾量表、汉密顿抑郁量表(HAMD)对71例PD患者的生活质量、疾病严重程度、日常生活能力、运动反应、精神状态及治疗并发症等指标进行评估,结合患者的年龄、性别、起病情况、吸烟、左旋多巴剂量、症状波动等因素评价其对生活质量的影响。结果一元相关分析显示:病程越长、治疗时间越久、左旋多巴剂量越大、UPDRS各项评分、Hoehn-Yahr分期越高,以及有抑郁或症状波动的PD患者生活质量越差(P<0.05～0.01)。逐步回归分析显示:影响PD患者生活质量的主要因素是患者的情感功能,其次是疾病的严重程度。结论情感功能是影响PD患者生活质量最重要的因素。     

藏族全面性强直阵挛性癫(癎)患者生活质量及其影响因素的调查

目的调查藏族地区全面性强直阵挛性癫癎患者生活质量及其影响因素。方法应用癫癎患者生活质量评定量表-31(QOLIE-31)对126例确诊为全面性强直阵挛性癫癎的藏族患者进行生活质量评定,并对影响其生活质量的因素进行分析。结果QOLIE-31总评分为(48.58±17.29)分,分项中对发作担忧评分最低[(32.92±22.97)分],药物影响的评分最高[(77.11±20.98)分]。单因素分析显示:不同性别、职业、婚姻状况、年龄、文化程度的生活质量评分差异有统计学意义(均P<0.05);而不同发作频率、治疗与否评分差异无统计学意义。多因素分析表明,年龄、起病年龄、职业、文化程度、经济状况、发作次数是影响藏族全面性强直阵挛性癫癎患者生活质量的因素(均P<0.05);其中年龄、职业影响生活质量多个方面,而病程、婚姻状况、性别不是影响因素。结论藏族全面性强直阵挛性癫癎患者的生活质量差;职业、经济状况、文化程度、年龄、起病年龄、发作频率是影响生活质量的因素;年龄、职业影响生活质量的多个方面。     

Quality of life in children with epilepsy

Background:

Epilepsy is a chronic medical condition with many co-morbid features. It has been observed that children with epilepsy (CWE) have a compromised quality of life (QOL).

Objective:

To assess the QOL in CWE and to study the various factors affecting QOL among CWE.

Materials and Methods:

The sample consisted of 102 CWE aged 5–15 years of either sex. QOL was measured by Quality of Life in Childhood Epilepsy (QOLCE) questionnaire, a 76-item, parent-reported questionnaire. Cronbach alpha was used to determine the internal consistency of the subscales and Pearson correlation to determine construct validity. The t-test and analysis of variance were used to compare mean QOLCE scores.

Results:

Factors affecting QOL included age, place of residence, socioeconomic condition, maternal education, seizure type and frequency and number of antiepileptic drugs.

Conclusion:

CWE have a relatively compromised QOL and comprehensive care needs to go beyond the attempt of controlling seizures.     

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.     

成年癫痫患者生活质量-31量表的信度和效度

目的 考核QOLIE-31评价成年成年癫痫患生活质量的信度和效度。方法 采用随机抽样调查方法，用QOLIE-31量表信函调查成年癫痫患52例。计算该量表的重测信度。内部一致性信度和构建效应。结果 QOLIE-31量表具有较好的信度和效度。结论 QOLIE-31量表是一份较好的用于测量我国癫痫病人生活质量的量表。     

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。     

Depression,anxiety and quality of life in parents of children with epilepsy

0bjectives – To assess the impact of childhood epilepsy on parental quality of life (QOL) and psychological health, and to investigate possible correlations between parental QOL and background variables as well as parental anxiety and depression. Subjects and methods – Parents having an epileptic child (n = 263) and parents having a healthy child (n = 270) were enrolled. Groups were in balance for background variables. Short‐Form Health Survey (SF‐36) Questionnaire, Zung Depression Scale (ZDS) and Zung Anxiety Scale (ZAS) were applied to all parents. Patients were divided into the first visit group (newly diagnosed epilepsy) and follow‐up visit group. Results – The parents of children with epilepsy had significantly lower QOL scores in SF‐36 for all subscales and higher levels of depression and anxiety by using ZDS and ZAS. The factors correlated with parental QOL were seizure control, visit status, anxiety, depression, employment, cost of epilepsy, status epilepticus, drug side effect and age of parents. Conclusions – Childhood epilepsy has a severe impact on parental QOL and psychological health, and recognition of possible correlations between parental QOL and background variables will be helpful to improve parental QOL.     

Factors affecting health-related quality of life amongst Asian patients with Parkinson's disease

Background and purpose:  This cross-sectional study was carried out to identify factors predicting health-related quality of life (HRQoL) amongst Asian patients with Parkinson's disease (PD).
Methods:  A total of 183 PD patients (mean age: 61 years, male: 68.9%) attending a tertiary neuroscience clinic in Singapore completed the English or Chinese version of the 8-item Parkinson's Disease Questionnaire (PDQ-8). Patients' socio-demographic characteristics and their clinical variables were analysed to identify factors influencing the PDQ-8 Summary Index and responses to its eight dimensions.
Results:  In the multiple linear regression model, the use of Chinese survey, higher motor score and longer duration of PD were associated with poorer overall HRQoL. The multiple logistic regression analyses showed that female patients and patients with higher Hoehn and Yahr stage were more probably to report worse emotional well-being; patients who completed Chinese survey reported more problems with mobility, cognition and stigma; patients with higher motor scores were more probably to report problems with activities of daily living; patients with longer duration of PD were more probably to report problems with mobility, social support, communication and stigma.
Conclusion:  Both socio-demographic factors and disease-specific variables influence HRQoL in PD patients; the effects of culture-related factors on HRQoL should not be overlooked when assessing HRQoL in multi-cultural settings.     

Patient-based assessments of quality of life in newly diagnosed epilepsy patients: validation of the NEWQOL

PURPOSE: In epilepsy, patient-based assessments are increasingly used as outcome measures in clinical trials of novel therapies alongside the traditional clinical measures of efficacy. The objective of this study was to validate psychometrically a quality of life (QOL) measure developed for use with recently diagnosed epilepsy patients. METHODS: The NEWQOL (Quality of Life in Newly Diagnosed Epilepsy Instrument) is a 93-item self-administered battery designed to assess QOL in patients with new-onset epilepsy. NEWQOL consists of eight multi-item scales (13 subscales) measuring several health parameters: Anxiety, Depression, Social Activities, Symptoms, Locus of Control/ Mastery, Neuropsychological Problems (includes the following subscales: Fatigue, Memory, Concentration, Motor Skills, and Reading), Social Stigma, Worry, Work Limitations, and several single-item measures (General Health, Number of Seizures, Social Limitations, Social Support, Self Concept, Ambition Limitations, Health Transition, and General Limitations). The NEWQOL was collected at baseline and 1 week post-baseline from 108 patients in the U.K. and U.S. RESULTS: All of the multi-item scales had high item discriminant validity, good test-retest reliability, and acceptable levels of internal consistency reliability; all but the Reading and Stigma subscales had negligible floor and ceiling effects. General linear models were used to examine the known groups validity of NEWQOL. Significant differences were observed in the Worry, Symptoms, Summary Neuropsychological Scales, and all Neuropsychological subscales (Memory, Fatigue, Concentration, Motor Skills, and Reading), indicating poorer functioning in the more frequent or severe seizure groups. CONCLUSIONS: Results from this study offer supportive evidence that NEWQOL has good validity and reliability and can discriminate between patient groups, particularly in relation to symptoms and psychological problems. We conclude that NEWQOL represents a useful measure for future studies in this patient population.     

Eleven influential factors for quality of life in adults with epilepsy

BACKGROUND： Research focused on the quality of life of epileptic patients began only very recently in China; in particular, most research has focused on children, but less on epileptic adults. OBJECTIVE： To survey and analyze 11 influential factors for quality of life in adults with epilepsy by using quality of life epilepsy-31 scale. DESIGN： Cross-sectional study. SETTING： Department of Neurology, First Hospital Affiliated to Jinan University; Department of Neurology, First Affiliated Hospital of Wenzhou Medical College. PARTICIPANTS： A total of 107 adults with epilepsy for longer than one year were selected from Department of Neurology, First Hospital Affiliated to Jinan University between March 2004 and December 2006. The included patients met the Classification and Diagnostic Criteria of Epileptic Attack published by International Anti-Epilepsy League in 1981, and they provided informed consent. METHODS： General states, including course, attack frequency, marriage status, educational level, occupational types, economic status, attack types, drug types, and drug amount, were recorded. There were seven aspects in the Quality of Life Epilepsy-31 scale, including attack worry, life satisfaction, emotion, vigor/tiredness, drug influence, cognitive function, and social function. The scores positively correlated with the quality of life. Possible influential factors for quality of life were analyzed by one-way ANOVA and multivariate regression analysis. MAIN OUTCOME MEASURES： Course, attack frequency, marriage status, educational level, occupational types, economic status, attack types, drug types, drug amount, age, and sex. RESULTS： A total of 107 epileptic patients were included in the final analysis. Influential factors for quality of life in epileptic adults included attack frequency, educational level, economic status, attack types, drug amount, age, and course of disease （P 〈 0.05）. Among them, attack frequency negatively correlated with attack worry, life satisfaction, emotion, vigor/tir     

Quality of life and memory performance in patients with temporal lobe epilepsy

OBJECTIVE: To explore the contribution of memory performance to quality of life (QOL) in patients with left or right temporal lobe epilepsy (TLE). SUBJECTS AND METHODS: Sixty-five patients with left or right TLE compiled the QOL in Epilepsy-89 Inventory (QOLIE-89), the State-Trait Anxiety Inventory (STAI) and the Hopelessness Scale (BDI) for self-evaluation of QOL and mood. Memory was assessed by tests of verbal and non-verbal memory and the Questionnaire of Memory Efficiency (QME). A neuropsychological battery was also administered to assess general intelligence, attention, visual perception, language, set shifting, word fluency and conceptual-motor tracking. RESULTS: On factor analysis, the neuropsychological battery and mood scales consisted of six factors (Memory, Mental Speed, Mood, Praxis, Sorting and Perception), while the QOLIE-89 consisted of five factors (Psychosocial Satisfaction, Epilepsy-Related Effects, Role, Physical Performance, Cognition). On regression analysis, overall QOLIE-89 score was predicted by the factor Mood and QME score. The QOLIE-89 factor Cognition was predicted by QME score and the Memory, Mental Speed, Perception and Praxis factors of the neuropsychological battery. CONCLUSION: In TLE patients self-reported memory, as assessed by QME, is an important predictor of QOL, and also correlates with performance on memory tests. This suggests that memory improvement by specific training may help to improve QOL in these patients.     

Familiarity with, knowledge of, and attitudes toward epilepsy in residents of Seoul, South Korea

BACKGROUND AND PURPOSE: The aim of this study was to investigate the perceptions of epilepsy in Seoul, South Korea, a country where social stigma toward epilepsy is still pronounced. METHODS: We randomly selected 1000 persons living in Seoul and performed telephone interviews regarding public awareness, knowledge, and attitudes toward epilepsy. RESULTS: Among 1000 respondents, the 92% who had read or heard about epilepsy became the subjects of the study. Word of mouth was most often referenced as a source of knowledge (78%). Forty-seven percentage believed that epilepsy is inheritable, whereas 5% thought that epilepsy is a mental illness. Marriage of their children to an epileptic person, childbearing by women with epilepsy, and employing a person with epilepsy were opposed by more than 50% of respondents. The reasons for the negative attitudes were that epilepsy was hereditary and untreatable (P < 0.05, respectively). CONCLUSIONS: Our study revealed that there still remains negative attitudes regarding the marriage, childbearing, and employment of persons with epilepsy, which may stem from misconceptions about the cause and treatability of epilepsy, possibly due in part to the influence of herbal medicine, and South Korea's ethnic homogeneity. Public health education either through media or school health education is urgently needed to improve knowledge about, and attitudes toward epilepsy.     

Factors affecting the quality of life in hemifacial spasm patients

Background and purposeHemifacial spasm (HFS), a movement disorder manifested by unilateral spasms of the muscles innervated by the facial nerve, interferes with social life in about 90% of patients, causing social isolation and depression and having a significant impact on the quality of life. The aim of the study was to assess factors affecting the quality of life in patients with HFS in respect of influence of the severity of depression symptoms and botulinum toxin type A (BTX-A) therapy.Material and methodsEighty-five out of 129 patients included in the HFS database of the Movement Disorders Out-patient Clinic, Department of Neurology, University Hospital, Cracow who fulfilled the inclusion criteria and had no exclusion criteria (suffering from concomitant movement disorders, other severe chronic diseases or cognitive impairment) were studied. Demographic and clinical data (age at onset, disease duration and accompanying symptoms) were collected. Severity of HFS was assessed by the five-point clinical scale and seven-point Clinical Global Impression scale. Quality of life was assessed with the HFS-36 questionnaire and severity of depressive symptoms was evaluated with the Beck Depression Inventory. HFS-36 was performed twice, before BTX-A injection and two weeks later.ResultsThe mean global score of HFS-36 was 47 ± 31 (maximum: 140 pts). Decreased HFS-36 score resulted from divergent deterioration in all subscales included in the questionnaire. Independent risk factors of deterioration in HFS-36 were increased severity of HFS and depressive symptoms as well as accompanying trismus. The HFS-36 score depended on the number and type of accompanying symptoms as well. Botulinum toxin type A therapy led to a significant improvement of HFS-36, particularly high in patients with multiple (> 4) HFS-related symptoms.ConclusionsThe HFS-36 score depends mostly on severity of HFS, depressive symptoms and occurrence of accompanying trismus. It improves after BTX-A treatment.