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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PedsQLTM4.0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。
Objective To understand the postoperative quality of life of children with anorectal malformations (ARM) and provide a basis for effective clinical intervention in order to improve their quality of life. Methods The Chinese version of PedsQLTM 4.0 quality of life questionnaire was used to investigate the difference of quality of life between 100 children with ARM and 2 healthy children after 2 years and 5 years after follow-up. Results 1) The scores of emotional quality of life in 2-year-old children with ARM were higher than those of healthy children of the same age (P <0.05). The scores of quality of life and total scores of children with 5-year-old children with ARM were higher than those of children with same age P <0.05), in which the difference of emotional quality of life quality score was the largest. 2) The self-rated quality of life of children aged 5 ~ ARM was higher than that of parents (P> 0.05). The scores of self-rated quality of life in 5-year-old children were higher than parents’ reported scores (P <0.05). 3) The corresponding dimensions of quality of life in children aged 2 years and 5 years old and 2 years with defecation disorder were lower than those without defecation disorder (P <0.05). Conclusion 1) The quality of life can be improved by reducing the psychological stress and giving more care and attention, especially for the emotional function. Parents pay special attention. 2) Defecation disorders have a negligible negative impact on the quality of life of children aged 2 years to 5 years and ARM.