癫癎儿童健康相关生活质量研究

为探讨癫痫儿童的健康相关生活质量（HRQOL）及其影响因素，采用澳大利亚癫痫儿童生活质量父母问卷（QOLCE）对101例癫痫儿童进行生活质量的评估，以探讨影响因素并与正常儿童进行比较。结果表明，癫痫儿童的生活质量明显低于正常儿童，年龄、起病年龄、发作频率、发作类型、病程，抗癫痫药物及智力等均影响患儿的生活质量。提示对癫痫儿童应采取综合治疗措施，重视患儿的心理健康，才能提高其生活质量。     

癫痫患者生活质量研究进展

随着社会进步及医学发展，人们的健康意识不断深化，以往延用的反映健康的指标已不能满足要求，生活质量正是在健康观念更新的背景下而产生的评价自身的指标系统，本文对癫痫患者生活质量的研究概况进行综述。     

癫痫患儿生活质量研究

目的研究癫痫患儿生活质量的特点及其影响因素。方法对神经科门诊的93例癫痫患儿进行生活质量评定，并与在年龄、性别、文化程度等方面严格匹配的93名正常儿童进行对比。生活质量评定工具：抗癫痫药物的不良反应量表（SEP），青少年癫痫患儿的生活质量-48项量表（QOLIE—AD-48），焦虑自评量表（SAS），汉密尔顿抑郁量表（HAMD）。结果患儿常见的药物不良反应有皮疹、注意力不易集中、记忆障碍；患儿生活质量损害的范围广泛（P〈0．01），其中社会支持的损害最明显；患儿焦虑抑郁的得分和对照组比较，差异有统计学意义（P〈0．01）。多因素分析发现抗癫痫药物的不良反应、焦虑、抑郁、羞耻感与生活质量有相关性，且具有统计学意义（P〈0．05）。结论除合理的药物治疗外，应对患儿进行包括心理干预的综合治疗以提高患儿的社会功能，全面提高患儿的生活质量。     

抗癫痫药物的安全性及癫痫患儿的生活质量

抗癫痫药物的安全性对儿童十分重要，主要是指药物的不良反应、药物之间的相互作用以及药物可能加剧癫痫发作。癫痫患儿的生活质量评估包括健康的各个方面，反映疾病本身及其治疗对躯体、心理以及社会的作用。评估包括普适性量表和疾病特异性量表，建汉通过二者综合来评估癫痫患儿的生活质量。     

癫痫患者生活质量研究进展

随着社会进步及医学发展，人们的健康意义不断深化，以往延用的反映健康的指标已不能满足要求，生产质量正是在健康观念更新的背景下而产生的评价自身的指标系统，本文对癫痫患者生活质量的研究概况进行综述。     

哮喘儿童主观生活质量研究

目的 探讨哮喘对儿童主观生活质量的影响,以及生活质量测评在哮喘儿童健康评估中的意义.方法 抽取9～12岁健康儿童189例,哮喘儿童128例,其中病情已控组60例,未控组68例,应用儿少主观生活质量问卷进行对照评估研究.结果 哮喘未控组儿童主观生活质量在认知、情感水平及总体满意度显著低于哮喘已控组及健康组(P均<0.05),哮喘已控组情感水平满意度高于健康组(P<0.05).结论 哮喘末控制影响患儿主观生活质量满意度,提高哮喘儿童主观生活质量关键是控制疾病.     

Tourette综合征儿童主观生活质量研究

目的：探讨Tourette综合征（TS）儿童的主观生活质量状况,为其综合干预提供理论依据。方法：选取儿童保健科就诊的174例TS患儿（≥8岁）作为病例组,选取儿童保健科门诊的正常体检儿童186例(≥8岁)为对照组。采用病例对照研究的方法探讨TS儿童的主观生活质量状况。结果：TS儿童主观生活质量总分（156.6±21.1）低于对照组（164.2±21.2）（P<0.01）,家庭生活、学校生活、认知成分、抑郁体验和焦虑体验得分（19.1±3.5,24.1±4.4,90.6±13.3,24.0±4.6,23.8±4.4）亦低于对照组（20.7±3.0,26.6±3.2,97.9±15.3,25.1±3.1,24.7±3.5）（P<0.05）。相关分析发现TS儿童主观生活质量总分与患儿年龄、病程、症状严重程度、儿童行为总分及家庭矛盾性呈负相关 (r=-0.432,-0.213,-0.869,-0.137, -0.257;均P＜0.01),而与家庭娱乐性呈正相关(r=0.084,P＜0.01)。多元逐步回归分析显示TS儿童主观生活质量的影响因素是症状严重程度、患儿年龄、家庭矛盾性和娱乐性(β′=-0.787,-0.171,-0.109,0.106;P<0.01)。结论：TS儿童主观生活质量不佳;为提高患儿主观生活质量,尽早控制临床症状与改善家庭环境是必要的。     

临床下电活动癫痫患儿的健康生活质量

目的探讨临床下电活动癫患儿的健康相关生活质量(HRQOL)。方法门诊随访的癫患儿临床下电活动30例、有临床发作50例、无临床发作也无电活动28例和非癫对照儿童30例为研究对象,采用癫患儿生活质量父母问卷(QOLCE),由上述观察对象的父母或其他监护人完成问卷填写,按量表评分标准进行评分,得分高者生活质量好。结果临床下电活动组的多个分量表得分较对照组低;总的健康和自评生活质量量表得分高于有临床发作组。结论临床下电活动患儿生活质量虽好于有临床发作的癫患儿,但它仍明显影响患儿认知功能、行为,限制患儿日常生活,影响患儿的社会功能,使患儿的生活质量低于正常儿童。     

Quality of life in children with undiagnosed and diagnosed asthma

This study describes the impact of undiagnosed and diagnosed asthma on quality of life in schoolchildren aged 7–10 years and their caregivers in a cross-sectional community-based study. Diagnosed asthma was defined as the parents’ confirmation of a physician’s diagnosis of asthma. Undiagnosed asthma was defined by asthma symptoms combined with airway reversibility or bronchial hyperresponsiveness. Quality of life was evaluated in all children with asthma and a sample of healthy controls by the Pediatric Asthma Quality of Life Questionnaire, and by the Paediatric Asthma Caregiver’s Quality of Life Questionnaire. We studied the impact of breathing problems on school absence. Compared with healthy controls, quality of life scores among children and their caregivers were lower if the child had asthma (P < 0.05), with lowest scores in diagnosed asthma (P < 0.05 compared with undiagnosed asthma). Children with asthma reported more school absence (P < 0.05), with highest absence rate in those with diagnosed asthma. In conclusion, both undiagnosed and diagnosed asthma have a significant impact on the quality of life of both children and their caregivers.     

Correlates of quality of life with epilepsy

Objective: To examine the quality of life of children with epilepsy and to identify the demographic, disease related, and behavioral and emotional functioning variables in the prediction of quality of life of children with epilepsy.Method: Forty three children aged 4 to 15 years (Mean=10.3 years) with epilepsy were recruited from the outpatient services of the Department of Pediatrics, of a tertiary care teaching hospital in North India. Quality of life was measured by Impact of Epilepsy Schedule, a 39 items parent reported questionnaire and child's emotional and behavioral functioning at home was assessed by the Childhood Psychopathology Measurement Schedule.Results: Majority of the parents expressed major concerns regarding seizures, treatment by anticonvulsants, present and future problems for the child and problems in parenting. Nearly 40% of the children had psychopathology scores in the clinically significant maladjustment range. Step-wise multiple regression analysis revealed that the psychopathology scores and mother's education accounted for 39% of the variance in the quality of life scores.Conclusion: Children with epilepsy have a relatively compromised quality of life and focusing simply on control of seizures may not address the full range of child's emotional and behavioral difficulties.     

Quality of life: urinary bladder augmentation or substitution in children

Purpose  Bladder augmentation and substitution has been assumed to improve health-related quality of life in patients with urinary incontinence. This study was performed to elicit an evidence base for or against the above hypothesis. Methods  Between 1988 and 2006, 67 bladder augmentations and 7 bladder substitutions were performed at our institute. Inclusion criteria for the cross-sectional study were a postoperative period of more than 1 year and an age of at least 10 years at the time of operation. A multimodality treatment-specific questionnaire (comprising 38 questions) was designed and sent to 61 patients. Quality of life was investigated in all patients and between the groups of patients with meningomyelocele (Group A) versus bladder exstrophy (Group B), patients, who are catheterizing themselves via urethra (Group C) versus stoma (Group D) and patients who are using (Group E) versus not using wheelchair (Group F) following the surgery. For the statistical analysis Students t test, Wilcoxon signed rank test and correlation analysis were used. Results  A significant overall improvement was found in patients quality of life following this surgery (P < 0.05). Ninety percent of patients would prefer again bladder augmentation or substitution to their previous state. Patients with meningomyelocele are changing pads or diapers more frequently than exstrophy patients because of their bowel problems postoperatively. Quality of life improved better in patients performing CIC via stoma than in patients who perform it via their native urethra (P < 0.05). Outcomes were independent of patients age and of the post-augmentation time to assessment (P < 0.05). Conclusions  Bladder augmentation or substitution significantly improved the health-related quality of life in children and young adolescents taking part in the study. The authors are planning a prospective long-term follow-up of the patients (longitudinal study) to validate the results.     

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目的改善与提高学习困难儿童的生活质量。方法2003年2～8月采用短程结构式游戏对学习困难儿童进行生活质量心理干预,并用程灶火编制的儿少主观生活质量问卷(ISLQ)对学习困难儿童干预前后的生活质量进行检查评定。采用整群随机抽取湛江市2所小学4年级儿童共750名,按标准筛选出学习困难儿童83名,分为观察组与对照组,同时从该2所小学同年级学习成绩在中等或以上水平的学生中随机抽取50名,作为正常组。结果按随机抽样原则经过短程结构式游戏干预后观察组生活质量的总分和认知、情感两个成分的分值均高于对照组,差异具有显著性(P<0.01)。其中家庭生活、同伴交往、学校生活、自我认识和抑郁体验5个方面明显高于对照组,差异具有显著性(P<0.01)。结论短程结构式游戏是改善学习困难儿童生活质量的一种有效心理干预方法。     

Quality of life in neurologically healthy children with urinary incontinence

AIM: To bring forward the arguments for active treatment of urine incontinence in otherwise healthy children, a quality-of-life (QoL) study was performed. SUBJECTS AND METHODS: A self-rating QoL questionnaire, child-adjusted and validated, was completed by 120 neurologically healthy children, aged 6-16 y, with urinary incontinence. Another 239 age-matched children made up a control group. The two groups were compared both totally and in age-related subgroups (6-8, 9-12, >12 y) concerning the index for all questions, for universal parts (without questions dealing with incontinence) as well as for specific key domains. RESULTS: The patient group had a significantly lower index than the control group both with and without items related to incontinence (p<0.0001). Social situation, self-esteem and self-confidence were most influenced, particularly in the youngest children. Thirty-one children (13%) of the control group reported incontinence and did not score their QoL as good as their continent peers but better than the study patients. CONCLUSION: From the quality-of-life aspects, the study supports active treatment of urinary incontinence in children already at younger ages.     

Quality of life and functional outcome in early school-aged children after neonatal stroke: A prospective cohort study

BackgroundQuality of life (QoL) is recognized internationally as an efficient tool for evaluating health interventions. To our knowledge, QoL has not been specifically assessed in children after neonatal arterial ischemic stroke (AIS).AimTo study the QoL of early school-aged children who suffered from neonatal AIS, and QoL correlation to functional outcome.MethodWe conducted a multicenter prospective cohort study as part of a larger study in full-term newborns with symptomatic AIS. Participating families were sent anonymous QoL questionnaires (QUALIN). Functional outcome was measured using the Wee-FIM scale. Healthy controls in the same age range were recruited in public schools. Their primary caregivers filled in the QUALIN questionnaires anonymously. We used Student's t-test and a rank test to compare patients and controls' QoL and functional outcomes.Results84 children with neonatal AIS were included. The control group was composed of 74 children, of which ten were later excluded due to chronic conditions. Mean ages and QUALIN median scores did not differ between patients and controls. Median Wee-FIM scores were lower in hemiplegic children than in non-hemiplegic ones (p < 0.001). QoL scores did not seem correlated to functional outcome.InterpretationThose results could support the presence of a “disability paradox” in young children following neonatal AIS.     

Quality of life in children with sickle cell hemoglobinopathy

Objective: To identify specific domains and traits that are most affected in patients with sickle cell anemia and traits with respect to normal children.Methods: Children attending the regional hemoglobinopathy center at IGMC, Nagpur in age group of 8–14 years were assessed. Of 52 children studied, 25 had sickle cell anemia (SCA), 12 had sickle cell trait (SCT) and 15 wre normal control. The (quality of life (QOL) was assessed using multidimensional interview based questionnaire.Results: All domains, physical, psychosocial, cognitive and morbidity were affected. In SCA playing and mobility were most affected. There was feeling of sadness or disinterest and lack of support from teachers. The school attendance, vocational achievement perception, entertainment and participation in cultural activities were also affected. The intensity of weakness and pain was greater in SCA children who left that they were affected by a major illness. The unusual finding was that the SCT children also showed affection of all domains as compared to normal children, which was perhaps due to the stigma of the disease.Conclusion: QOL is affected in children with sickle cell disease (SCD) and to a lesser extent in SCT. Interventions to improve QOL should target the affected items. Improving awareness of the disease and its manifestation will help to alleviate the psychosocial affliction of children with SCT     

Quality of life in children with hypoplastic left heart syndrome

AIM: To measure quality of life in children with hypoplastic left heart syndrome and their families. METHODS: A questionnaire exploring socioeconomic status, structure and function of networks and psychological well-being was completed by the families of all 18 patients older than 2 years (age range 2.7-10.6). The results were compared with those of 180 healthy Swedish children matched for age and sex. RESULTS: There were no significant differences between the groups in any of the aspects of socioeconomic status. Study group parents had not more available time for their child (p < 0.05) and more separations/divorces (p < 0.01). The patients had lower self-esteem (p < 0.05), more psychosomatic symptoms (p < 0.01) [corrected] and lower peer acceptance (p < 0.01) than control children. CONCLUSION: With regard to psychological well-being, quality of life was significantly lower in children with hypoplastic left heart syndrome than in healthy controls.