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目的 调查肛门直肠畸形患儿术后 30年以上生活质量状况。方法 随访 8例肛门直肠畸形患者 (年龄 33～ 41岁 )。调查患者一般状况如文化程度、婚姻家庭状况等 ,应用自行设计的肛门直肠畸形患儿术后 30年以上生活质量问卷 ,评估该 8例患者和对照组 (2 4例健康成人 )的生活质量状况。包括排便功能、饮食、工作、性生活、社交娱乐、心理情绪等 6方面 10项内容。结果 8例患者均结婚并有自己的子女。 6例存在排便功能障碍。 2例患者社会工作方面因此受到影响 ,3例患者性生活受到限制 ,4例患者因排便功能障碍经常忧愁和烦恼。根据肛门直肠畸形患儿术后 30年以上生活质量问卷 ,患儿组生活质量评分显著低于正常对照组。结论 肛门直肠畸形患儿术后排便功能障碍影响患儿生活质量。肛门直肠畸形患儿术后远期生活质量低于正常人。应重视肛门直肠畸形患儿的手术疗效 ,应用生物反馈疗法等康复治疗 ,进行长期规律随访 ,提高其生活质量
Objective To investigate the quality of life of children with anorectal malformations more than 30 years after operation. Methods Eight cases of anorectal malformations (33-41 years old) were followed up. The quality of life of the 8 patients and the control group (24 healthy adults) was evaluated by questionnaire about the general condition of the patients, such as educational level, marital status and so on. . Including bowel function, diet, work, sex life, social entertainment, psychological and emotional 6 aspects of 10 items. Results All 8 patients were married and had their own children. Six cases had defecation dysfunction. Two patients were therefore affected by social work, 3 patients had limited sexual life, and 4 patients were often sad and troubled due to defecation dysfunction. According to the quality of life questionnaire of children with anorectal malformations more than 30 years after operation, the quality of life scores of the children group were significantly lower than those of the normal control group. Conclusion The postoperative defecation dysfunction in children with anorectal malformation affects children’s quality of life. Anorectal malformation children with postoperative long-term quality of life is lower than normal. Should pay attention to the surgical treatment of children with anorectal malformation, the application of biofeedback therapy and other rehabilitation, long-term follow-up to improve their quality of life