先天性肛门直肠畸形儿童生存质量的研究

鲁玉姣; 钟燕; 周小渔; 康如彤; 朱莎

doi:10.11852/zgetbjzz2015-23-10-22

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中国儿童保健杂志 ›› 2015, Vol. 23 ›› Issue (10) : 1080-1083. DOI: 10.11852/zgetbjzz2015-23-10-22

临床研究与分析

先天性肛门直肠畸形儿童生存质量的研究

鲁玉姣,钟燕,周小渔,康如彤,朱莎

作者信息 +

Study on quality of life of children with congenital anorectal malformations.

LU Yu-jiao,ZHONG Yan,ZHOU Xiao-yu,KANG Ru-tong,ZHU Sha.

Author information +

文章历史 +

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。

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.

导出引用

鲁玉姣,钟燕,周小渔,康如彤,朱莎. 先天性肛门直肠畸形儿童生存质量的研究[J]. 中国儿童保健杂志. 2015, 23(10): 1080-1083 https://doi.org/10.11852/zgetbjzz2015-23-10-22

LU Yu-jiao,ZHONG Yan,ZHOU Xiao-yu,KANG Ru-tong,ZHU Sha.. Study on quality of life of children with congenital anorectal malformations.[J]. Chinese Journal of Child Health Care. 2015, 23(10): 1080-1083 https://doi.org/10.11852/zgetbjzz2015-23-10-22

中图分类号： R729

参考文献

[1] Wijers CH,de Blaauw I,Marcelis CL,et al.Research perspectives in the etiology of congenital anorectal malformations using data of the international consortium on anorectal malformations:evidence for risk factors across different populations[J].Pediatr Surg Int,2010,26(11):1093-1099.
[2] Gangopadhyay AN,Pandey V.Anorectal malformations[J].J Indian Assoc Pediatr Surg,2015,20(1):10-15.
[3] Grano C,Aminoff D,Lucidi F,et al.Long-term disease-specific quality of life in children and adolescent patients with ARM[J].J Pediatr Surg,2012,47(7):1317-1322.
[4] Witvliet MJ,Slaar A,Heij HA,et al.Qualitative analysis of studies concerning quality of life in children and adults with anorectal malformations[J].J Pediatr Surg,2013,48(2):372-379.
[5] Vami JW,Seid M,Kurtin PS.The PedsQL^TM4.0:reliability and validity of the Pediatric Quality of Life inventoryTM Version 4.0 Generic Core Scales in healthy and patient populations[J].Med Care,2001,39(8):800-812.
[6] Stevanovic D,Lakic A,Damnjanovic M.Some psychometric properties of the pediatric quality of life inventory version 4.0 generic core scales ( PedsQL) in the general Serbian population[J].Quality of Life Research,2011,20(6):1123.
[7] 卢奕云,田琪,郝元涛,等.儿童生存质量测定量表PedsQL4.0中文版的信度和效度分析[J].中山大学学报:医学科学版,2008,29(3):328-331.
[8] Grano C,Bucci S,Aminoff D,et al.Quality of life in children and adolescents with anorectal malformation[J].Pediatr Surg Int,2013,29(9):925-930.
[9] Stenstrom P,Kockum CC,Bener DK,et al.Adolescents with anorectal malformation:physical outcome,sexual health and quality of life[J].Int J Adolesc Med Health,2014,26(1):49-59.
[10] Sawyer MG,Reynolds KE,Couper JJ.Health-related quality of life of children and adolescents with chronic illness-a two year prospective study[J].Quality of Life Research,2004,13(7):1309-1319.
[11] Goldstein SL,Graham N,Burwinkle T,et al.Health-related quality of life in pediatric patients with ESRD[J].Pediatric Nephrology,2006,21(6):846-850.
[12] 孙丽君,江逊,张玉海,等.反复呼吸道感染儿童生存质量及影响因素研究[J].中国儿童保健杂志,2013,21(2):137-140.
[13] Sari BA,Demiro

ullari B,Ozen O,et al.Quality of life and anxiety in Turkish patients with anorectal malformation[J].Journal of Paediatrics and Child Health,2014,50(2):107-111.
[14] Bazo M,Bailez M.Health-related quality of life in children and adolescents undergoing surgery for Hirschsprung＇s disease and anorectal Malformations[J].Arch Argent Pediatr,2013,111(1):37-44.