【作者】 王佶；

【导师】 王艺； 赵耐青；

【作者基本信息】 复旦大学 ， 儿科学， 2008， 硕士

【摘要】 第一部分目的:研究评估癫痫患儿生活质量状况、特点及影响因素。对象与方法:对2007年6月～2007年12月期间来自复旦大学附属儿科医院神经专科门诊的163例癫痫患儿进行生活质量评定,并与同期在年龄、性别、受教育程度等方面匹配的167名正常儿童进行对比。采用抗癫痫药物的不良反应量表(SEP)、青少年癫痫患者的生活质量-48项量表(QOLIE-AD-48)、焦虑自评量表(SAS)、抑郁自评量表(SDS)作为生活质量评定工具进行比较。结果:1疾病及治疗情况:癫痫儿童平均年龄12岁,其起病年龄中位数为6岁,病程为8.1±3.5年。发作类型以全身强直阵挛发作为主(53.9%),发作形式以单一发作形式为主(89.6%)。41.7%的患儿最近1年无疾病发作。病因主要为原发性(69.9%),发作持续时间≥1分钟且＜5分钟所占比例最多,占54.6%。诊断癫痫后应用抗癫痫药物的患儿占93.9%,其中73.6%的癫痫患儿服用1种药物,只有4.9%的儿童服用3种药物,新诊断尚未应用药物的患儿仅为6.1%。其中65.5%的患儿服用丙戊酸钠,服用卡马西平、妥泰、奥卡西平、氯硝基安定的患儿的比例分别为11.2%、8%、6%和4.5%。其中74.8%的患儿有良好的服药依从性。2生活质量特点:(1)儿童患者常见的药物不良反应有:注意力不易集中、记忆障碍、疲劳、头痛、头昏眼花、嗜睡、紧张不安、攻击行为、坐立不安、抑郁、胃部不适;(2)儿童患者生活质量损害的范围广泛,涉及记忆/注意力、身体功能、社会支持、学校表现、健康感知和总体生活质量;(3)社会心理学特点儿童患者焦虑抑郁的得分和评分阳性率与对照组的差异有统计学意义(P值＜0.01)。羞耻感为癫痫患儿所特有,对癫痫患儿生活质量影响范围广泛。(4)多因素分析显示发作类型、起病年龄、病程、服药种类、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值＜0.05)。结论:1.儿童癫痫患者存在广泛的生活质量损害。2.癫痫发作类型(本研究病例中全身强直阵挛发作)、病程、服药种类、抗癫痫药物的不良反应、焦虑抑郁的情绪和患者的羞耻感是影响癫痫患儿生活质量的重要因素。第二部分目的:对癫痫及哮喘患儿生活质量的评估比较。对象与方法:采用健康测量量表SF-36对2007年6月～2007年12月期间来自复旦大学附属儿科医院神经专科门诊的85例癫痫患儿进行生活质量评定,与同期来自儿科医院儿童保健门诊及呼吸专科门诊的在年龄、性别、受教育程度等方面匹配的87名正常儿童和81例哮喘儿童进行对比研究。结果:1疾病及治疗情况:癫痫患儿和哮喘患儿在起病年龄、病程和最近1年的发作频率上无统计学差异(P值均＞0.05),均服用1种药物为主,一半以上儿童患者患病后从不忘记服药,两组儿童在服药种类、服药依从性上无统计学差异(P值均＞0.05)。癫痫患儿处于疾病发作控制期的为57.6%,至本次调查之前至少有1年未有疾病的发作;哮喘患儿处于疾病发作控制期的为50.6%,其最大呼气峰流速(PEF)监测持续保持个人最佳值的≥80%。另有10.6%和19.7%的癫痫患儿及哮喘儿童每年至少有1次疾病的发作。入选的哮喘儿童处于间歇发作及轻～中度非急性发作期。2生活质量特点:(1)癫痫患儿的生活质量总分和8个分项的得分与正常对照组相比均有显著的统计学差异(P值＜0.01)。(2)哮喘患儿的生活质量总分和生理功能、身体疼痛、总体健康和活力4个分项的得分和正常儿童的得分有显著的统计学差异(P值＜0.01)。(3)癫痫患儿生活质量较哮喘患儿生活质量差,无论在疾病控制阶段还是在疾病发作期癫痫患儿生活质量均不如哮喘儿童。(4)癫痫患儿情感功能及精神健康状况明显不如哮喘儿童,其心理障碍不因疾病控制而明显改善。结论:1.癫痫、哮喘儿童生活质量较正常儿童明显下降。2.癫痫患儿较哮喘患儿生活质量损害明显。3.SF-36量表可作为评价疾病控制程度的手段,辅助评价疾病治疗的疗效。4.癫痫、哮喘等慢性发作性疾病患儿的生活质量应引起临床高度关注,并作为疾病状态评估的重要指标。更多还原

【Abstract】 PartⅠObjective:To assess the characteristic and influencing factors of quality of life (QOL) in Chinese children with epilepsy.Methods:QOL of children with epilepsy(n=163) in the outpatient of Children’s Hospital of Fudan University during June 2007 to December 2007 were evaluated, and healthy children(n=167)(matched with sex,age,education) were studied as control.Side effect profile(SEP),quality of life in people with epilepsy-adolescent-48(QOLIE-AD-48),self-rating anxiety scale(SAS),self-rating Depression Scale(SDS) were used to assess the QOL of all children.Results:The average age of patients was 12,the median age of onset and disease course were 6 and 8.1±3.5 years old respectively.The main type of attack is Generalized tonic spasm attack(53.9%).41.7%patients were seizure free for more than one year.Idiopathy epilepsy account for 69.9%.The duration of attack was one minute to five minutes in 54.6%patients.93.9%patients had received AEDs,6.1% had not yet received AEDs.73.6%patients received one AED,and 4.9%children received three AEDs.The most common used AED is VPA(65.5%).The other AEDs were CBZ(11.2%),Topiramate(8%),Oxcarbazepine(6%),Chlorine Nitrazepam(4.5%) respectively.74.8%patients had good compliance.The common side effects in children with epilepsy were concentration deficit,memory dysfunction,tiredness, headache,giddify,sleepiness,nervous,combativeness,fidget,depression and stomache upset.The QOL impairment in children with epilepsy were extensive (P＜0.01).The scores and incidence of SAS and SDS in epilepsy group were significantly higher than those of control group(P＜0.01).Stigma is unique in children with epilepsy.Multiple factors analyses indicated that the type of attack,onset age, course of disease,the type of medication,side effects of antiepileptic drugs,anxiety, depression and stigma were correlated with QOL(P＜0.05).Conclusion:The QOL impairment in children with epilepsy were extensive.The type of attack(mainly GTCS),course of disease,the type of medication,side effects of antiepileptic drugs,anxiety,depression and stigma in children with epilepsy were important factors in QOL. PartⅡObjective:To compare the quality of life(QOL) in adolescents with epilepsy and asthma.Methods:QOL of children with epilepsy(n=85),healthy children(n=87) and children with asthma(n=81)(matched with sex,age,education) as control in the outpatient of Children’s Hospital of Fudan University during June 2007 to December 2007 were evaluated.SF-36(The Medical Outcomes Study 36-Item Short-Form Health Survey) was included in QOL assessment.Results:The onset age,disease course and the frequency of attacks had no difference in epilepsy group and asthma group(P＞0.05).All the patients received mainly one drug,and more than 50%patients never forgot the medication.The number of drug and medication compliance had no difference in both group(P＞0.05). 57.6%epilepsy patients were seizure free for more than one year.50.6%asthma patients were without attack,the largest peak expiratory flow(PEF) always kept above 80%.Another 10.6%and 19.7%of children with epilepsy and asthma in children had at least once attack each year.The QOL of children with epilepsy were lower than that in normal children(P＜0.01),and much more serious than children with asthma.The emotion function and mental health in epilepsy group was much poorer than those in asthma group.Psychological barriers in children with epilepsy were persistent regardless the seizure frequency.Conclusion:SF-36 scale can evaluate the QOL of chronic paroxysmal disorders. The QOL of chronic paroxysmal disorders such as epilepsy and asthma should be a high degree of clinical concern and assess the state of the disease as an important indicator.更多还原