调查食管闭锁(esophageal atresia,EA)术后患儿生活质量现状并分析其影响因素,为提高EA患儿的生活质量提供科学依据.方法 应用中文版儿童生活质量普通适用核心量表4.0版(Pediatric Quality of Life Inventory™ 4.0,PedsQL™4.0)对2007年 10 月至 2020 年 12 月就诊于首都医科大学附属北京儿童医院的2~18岁EA患儿进行生活质量调查,共发放问卷153份,回收合格问卷130份,其中男孩80例,女孩50例,中位年龄3.3(2.7,5.0)岁.将调查结果与全国常模进行比较,并对可能影响生活质量的因素进行分析.结果EA患儿PedsQL™4.0问卷的总分为(73.07±17.80)分,低于全国常模的(81.18±12.03)分(P<0.001).单因素分析结果显示男孩生活质量总分低于女孩(P=0.001),近1个月存在消化道问题(烧心、呕吐、吞咽困难、食物嵌塞、吞咽疼痛)、呼吸道问题(咳嗽、喘息、呼吸困难、胸部紧压感)或喂养问题(避免进食某些食物、吃小块食物、需高能量食物、进食时间>30 min、饮水辅助进食)的儿童总分均显著降低(P<0.05),既往接受胃造瘘术也与生活质量总分降低相关(P=0.020).多元回归分析显示,性别、咳嗽、进食时间>30 min是生活质量总分的影响因素.结论EA术后患儿生活质量相对较低,并受多种因素影响,加强规范化随访可以提高其生活质量.
Quality-of-life and related influencing factors in children with esophageal atresia
Objective To explore the quality-of-life of children with esophageal atresia(EA)and to examine its influencing factors to provide scientific rationales for improving quality-of-life.Methods Chinese version of Pediatric Quality-of-Life Inventory™ 4.0(PedsQL™ 4.0)was utilized for examining the quality-of-life of previously treated EA children aged 2-18 year.Scale scores were compared with the national norm and influencing factors of quality-of-life explored.Results A total of 130 qualified questionnaires were collected.There were 80 boys and 50 girls with a median age of 3.3(2.7,5.0)years.Total score of PedsQL™ 4.0 scale was lower than that of national norm of[(73.07±17.80)vs(81.18±12.03),P<0.001].Univariate analysis indicated that total score of boys was lower than that of girls(P=0.001).For the last 1 month,there were the symptoms of indigestion(heartburn,vomiting,dysphagia,food impaction & pain during swallowing),respiration(coughing,wheezing,dyspnea,chest tightness)or feeding(avoiding certain foods,eating small portions,ingesting energy-enriched foods,requiring>30 min to finish a large meal & higher fluid intake during meals)leading to lower total scores(P<0.05).Multivariate stepwise regression analysis revealed that gender,cough and requiring>30 min to finish a large meal were the influencing factors of total score of quality-of-life.Conclusion Quality-of-life of EA children is relatively low and it is affected by a great variety of factors.In the future,standardized follow-ups of EA children should be strengthened for improving quality-of-life.
Esophageal atresiaQuality of lifeQuestionnaireInfluencing factors