以健康测量量表评价癫癎及哮喘患儿生活质量的对照研究

目的以健康测量量表（SF-36）评估癫癎及哮喘患儿的生活质量。方法采用SF-36量表对2007年6至12月在复旦大学附属儿科医院神经专科、呼吸专科及儿童保健门诊就诊的癫癎患儿、哮喘患儿和健康儿童进行生活质量评定。结果研究期间85例癫癎患儿（癫癎组）、81例哮喘患儿（哮喘组）和87名健康儿童（正常对照组）进入分析。3组儿童的年龄、性别和受教育程度相匹配。①疾病及治疗情况：癫癎组和哮喘组服用1种药物者分别为70／85例和59／81例，癫癎组63／85例和哮喘组56／81例患病后规则服药，两组在服药种类和依从性上差异无统计学意义（P均〉0．05）；癫癎组36／85例至本次调查前至少有1年癫癎未发作；哮喘组29／81例最大呼气峰流速监测持续保持个人最佳值的80％以上。②生活质量评价：癫癎组的生活质量总分和8个分项的终得分与正常对照组差异均有统计学意义（P〈0．01）；哮喘组的生活质量总分及生理功能、身体疼痛、总体健康和活力4个分项的终得分与正常对照组差异均有统计学意义（P〈0．01）；无论疾病控制与否，癫癎组生活质量均较哮喘组差；癫癎组情感功能及精神健康状况明显差于哮喘组，其心理障碍不随疾病控制而明显改善。结论①癫癎和哮喘患儿生活质量较健康儿童明显下降；②癫癎患儿较哮喘患儿生活质量损害更为明显；③SF-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癫癎患儿的心理障碍应引起临床高度关注。

A comparative study on quality of life assessed with SF-36 in adolescents with epilepsy and asthma

Objective To compare the quality of life （QOL） in adolescents with epilepsy and asthma using SF-36 scale（ the medical outcomes study 36-item short-form heahh survey）. Methods QOL of children with epilepsy （ n = 85 ）, healthy children （n =87） and children with asthma （n = 81 ） （matched with sex, age and level of education） as control followed up in the outpatients of Children＇s Hospital of Fudan University were evaluated. These children respectively received survey in neurologist outpatients, child health care outpatients and respirologist outpatients. SF-36 scale was included in QOL assessment. Results Reliability and validity of SF-36 scale were retested. The Kappa of reliability and validity test was 0.87 and 0.86. All the children had no difference in family population and family income （ P 〉 0.05 ）. The ages of children were 14 - 18 years old, the average age was [ （ 15.6 - 15.7） ± 1.3] years old. There was no difference in onset age, disease course and the frequency of attacks between epilepsy group and asthma group （ P 〉 0.05 ）. 70 epilepsy patients and 59 asthma patients received one kind of drug. 63 epilepsy patients and 56 asthma patients never forgot the medication. There was no difference in the number of drug and medication compliance between two groups （ P 〉 0.05 ）. 36 epilepsy patients were seizure free lasting more than one year, other 79 patients were out of control. 29 asthma patients were without acute attack, the largest peak expiratory flow （PEF） always kept above 80%, other 52 asthma patients were active. The QOL of children with epilepsy was lower than that of healthy children, including total score （ Z = - 5. 123, P 〈 0.01 ） and other eight items （ physical functioning, role physical, bodily pain, general health, vitality, social functioning, role emotional, mental health ） （Z= -4.459, -3.253, -2.877, -5. 150, -4.311, -3.283, -3.604, - 4. 351, P 〈 0.01 ） , and much more serious than that of children with asthma in total score（ Z = 3. 600 ,P 〈 0.01 ） and other four items（ physical functioning, bodily pain, general health, vitality） （ Z = - 5. 382, - 2. 667, - 4. 416, - 3. 087, P 〈 0.01 ）. The QOL of children with asthma was lower than that of healthy children, including total score （Z = -3. 600, P 〈 0.01 ） and other four items（physical functioning, bodily pain, general health, vitality ） （Z = - 5. 382, - 2. 667, - 4. 416, - 3. 087, P 〈 0.01 ）. The QOL of children with epilepsy under control was lower than that of children with asthma under control in total score （ Z = - 6.118, P 〈 0. 01 ） and other six items （ role physical, social functioning, role emotional, mental health, general health, vitality） （Z= -4.048,-3.019, -5.588, -4.756, P〈0.01; Z= -2.976, -1.972, P〈0.05）. The QOL of children with epilepsy out of control was poorer than that of children with asthma out of control in total score （ Z = - 4.914, P 〈 0.01 ） and other five items （physical functioning, general health, role emotional, mental health, social functioning） （Z = - 2. 627, - 3. 152, - 4. 026, - 3. 664, P 〈 0.01 ; Z = - 2. 340, P 〈 0.05 ）. The emotion function and mental health in epilepsy group were much poorer than those in asthma group. Psychological barriers in children with epilepsy were persistent regardless the seizure frequency. Conclusions The QOL of children with epilepsy and asthma was obviously poorer than that of healthy children. The QOL of children with epilepsy was damaged much more seriously than that of children with asthma. SF-36 scale can evaluate the QOL of chronic paroxysmal disorders such as epilepsy and asthma. SF-36 scale can be used as a means of the degree of disease control, auxiliary evaluation of the efficacy of the treatment of disease. Besides reasonable usage of medications, comprehensive management including psychological intervention should be applied to children with epilepsy to improve the social function and QOL.