Abstract: Objective To investigate quality of life (QOL) of postoperative children with congenital anorectal malformations (ARM),and to provide evidence for developing effective interventions and improve QOL of children with ARM. Methods A total of 100 children who had ARM surgery 2 and 5 years ago were investigated by using the Chinese version of PedsQL^TM4.0 Scale.The scores of QOL were compared between children with ARM and healthy children. Results 1)QOL score of the emotional function among children with ARM aged 2 years old was higher than that of healthy children (P<0.05).QOL scores of the 4 dimensions and total scale among children with ARM aged 5 years old were higher than those of healthy children (P<0.05),the difference of QOL scores in emotional function was most significant.2)QOL self-report scores of children with ARM aged 5 years old were higher than those of caregiver proxy-report (P>0.05).QOL self-report scores of the 4 dimensions of healthy children at the same age were higher than those of caregiver proxy-report (P<0.05).3)QOL scores of the corresponding dimensions among ARM children aged 2 and 5 years old who had bowel disorders were lower than those who had not bowel disorders (P<0.05). Conclusion 1)By reducing psychological pressure and giving more love and care can improve quality of life.In addition,parents pay special attention on the emotional function of their children.2)Bowel disorders have negative impact on QOL of ARM children aged 2 and 5 years old.

Key words: anorectal malformations, quality of life, children

摘要： 目的 了解先天性肛门直肠畸形(anorectal malformations,ARM)儿童术后生存质量的状况,为临床制定有效的干预措施提供依据,以提高患儿的生存质量。方法 采用PedsQL^TM4.0生存质量量表中文版对100例ARM术后2年和术后5年的儿童进行随访调查,比较ARM患儿与健康儿童生存质量的差异。结果 1)2岁~ARM患儿情感功能生存质量得分高于同龄健康儿童相应维度得分(P＜0.05);5岁~ARM患儿生存质量各维度得分及总分均高于同龄健康儿童得分(P＜0.05),其中情感功能生存质量得分差异最大。2)5岁~ARM儿童自评生存质量得分高于家长报告得分(P＞0.05);5~岁健康儿童自评生存质量各维度得分高于家长报告得分(P＜0.05)。3)2岁~和5岁~两组伴有排便障碍的ARM患儿生存质量相应维度得分低于不伴有排便障碍的患儿(P＜0.05)。结论 1)生存质量可以通过减少心理压力,给予更多的关爱与照护得到提高,尤其在情感功能方面,家长给予了特别关注。2)排便障碍对2岁~和5岁~ ARM患儿的生存质量有着不可忽视的负面影响。

关键词: 肛门直肠畸形, 生存质量, 儿童