【摘要】 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 ,提高其生活质量更多还原

【Abstract】 Objective To investigate the quality of life more than 30 years of patients after anorectal malformation repair.Methods Eight patients with surgical treatment for anorectal malformation were followed up from 33 to 41 years. It was assessed by an interview and a modified Quality of Life questionnaire for adults with surgical management of anorectal malformation including ten items in six areas of everyday life (bowel function, diet habit, occupation, social activity, sexual life, and mental health ). Twenty four healthy people with similar age, sex and education level served as controls.Results All patients were married and had children. Six patients suffered from fecal dysfunction. Two patients had social problems relating to anal function . Three patients complained of sexual activities limited by poor anal function. Four patients were anxious about fecal incontinence. Their quality of life scores were significantly lower than that of the normal controls ( 29.6 ± 4.8 vs 33.1 ± 3.1 , P < 0.05 ). Conclusions The quality of life of adults after surgical anorectal malformation are influenced by fecal dysfunction and lower than that of the normal adults . The children who underwent operation on anorectal malformation should be followed up for a regular long term and received rehabilitative strategies to improve their quality of life until adulthood.更多还原