影响苯丙酮尿症患儿生活质量的相关因素及干预措施
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摘要
目的探讨苯丙酮尿症(PKU)患儿生活质量的影响因素。方法选取2014年12月～2016年12月唐山市妇幼保健院收治的76例PKU患儿作为研究组,采用生活质量综合评定量表(GQOLI-74)对其生活质量进行评价,并根据GQOLI-74评分将研究组患儿分为高分组和低分组;选取既往调查的84名河北省在校健康儿童作为对照组。分析PKU患儿生活质量的影响因素。结果研究组GQOLI-74各维度评分及总分明显低于对照组(P <0.05);采用GQOLI-74评分的76例PKU患儿中,高分组54例,低分组22例,两组年龄、监护人文化程度、监护人职业、PKU患儿生活质量比较,差异有统计学意义(P <0.05)。多因素Logistic回归分析发现,PKU患儿生活质量的影响因素为年龄4～10岁(OR=5.370,95%CI:1.861～15.496,P <0.05),保护因素为监护人文化程度(OR=0.288,95%CI:0.094～0.882,P <0.05)、职业为企业/事业单位(OR=0.215,95%CI:0.062～0.746,P <0.05)、其他职业(OR=0.402,95%CI:0.219～0.738,P <0.05)。结论 PKU患儿整体生活质量较健康儿童差,年龄、监护人文化程度、职业为其主要影响因素,应给予针对性干预措施,以提升患儿生活质量。
Objective To explore the influencing factors of quality of life in children with phenylketonuria(PKU).Methods A total of 76 children with PKU admitted to the Tangshan Maternal and Child Health Hospital from December 2014 to December 2016 were selected as the study group, and their quality of life was evaluated by Greneric Quarity of Life Inventor-74(GQOLI-74). According to GQOLI-74, the children in the study group were divided into high score group and low score group. Eighty-four healthy children in Hebei Province were selected as the control group.The influencing factors of quality of life in children with PKU were analyzed. Results The GQOLI-74 scores of all dimensions and total scores in the study group were significantly lower than those in the control group(P < 0.05). A total of 76 children with PKU were scored by GQOLI-74, 54 cases in high score group and 22 cases in low score group.There were significant differences in age, guardian′ s educational level and guardian′ s occupation between the two groups(P < 0.05). Multivariate Logistic regression analysis found that the factors influencing the quality of life of children with PKU was age 4-10 years(OR = 5.370, 95% CI: 1.861-15.496, P < 0.05), the protection factor were the guardian′s education level(OR = 0.288, 95% CI: 0.094-0.882, P < 0.05), and the occupation were the enterprise/institution(OR = 0.215, 95% CI: 0.062-0.746, P < 0.05), other occupations(OR = 0.402, 95% CI: 0.219-0.738, P < 0.05).Conclusion The overall quality of life of children with PKU is worse than that of healthy children. Age, the guardian′s education level and occupation are the main influencing factors. Targeted intervention measures should be given to improve the quality of life of children.
Objective To explore the influencing factors of quality of life in children with phenylketonuria(PKU).Methods A total of 76 children with PKU admitted to the Tangshan Maternal and Child Health Hospital from December 2014 to December 2016 were selected as the study group, and their quality of life was evaluated by Greneric Quarity of Life Inventor-74(GQOLI-74). According to GQOLI-74, the children in the study group were divided into high score group and low score group. Eighty-four healthy children in Hebei Province were selected as the control group.The influencing factors of quality of life in children with PKU were analyzed. Results The GQOLI-74 scores of all dimensions and total scores in the study group were significantly lower than those in the control group(P < 0.05). A total of 76 children with PKU were scored by GQOLI-74, 54 cases in high score group and 22 cases in low score group.There were significant differences in age, guardian′ s educational level and guardian′ s occupation between the two groups(P < 0.05). Multivariate Logistic regression analysis found that the factors influencing the quality of life of children with PKU was age 4-10 years(OR = 5.370, 95% CI: 1.861-15.496, P < 0.05), the protection factor were the guardian′s education level(OR = 0.288, 95% CI: 0.094-0.882, P < 0.05), and the occupation were the enterprise/institution(OR = 0.215, 95% CI: 0.062-0.746, P < 0.05), other occupations(OR = 0.402, 95% CI: 0.219-0.738, P < 0.05).Conclusion The overall quality of life of children with PKU is worse than that of healthy children. Age, the guardian′s education level and occupation are the main influencing factors. Targeted intervention measures should be given to improve the quality of life of children.
引文
[1]牛婷婷,周玉侠.低苯丙氨酸饮食治疗96例儿童苯丙酮尿症的临床观察[J].中国儿童保健杂志,2015,23(7):771-773.
[2]邱婷.苯丙酮尿症患者生活质量研究进展[J].国际儿科学杂志,2017,44(8):544-546.
[3]张燕,绳宇.恶性骨肿瘤患儿生活质量及影响因素的研究[J].中华护理杂志,2015,50(4):423-427.
[4]中华人民共和国卫生部.《卫生部新生儿疾病筛查技术规范》[S].2010版.北京:中华人民共和国卫生部,2010.
[5]华健,郑慕时.0~6岁发育筛查测验的编制[J].中华儿科杂志,1992(2):84-85.
[6]张厚粲.韦氏儿童智力量表第四版(WISC-IV)中文版的修订[J].心理科学,2009(5):1177-1179.
[7]汪向东,王希林,马弘.心理卫生评定量表手册(增订版)[M].北京:中国心理卫生杂志社,1999:73-81.
[8]Ney DM,Stroup BM,Clayton MK,et al.Glycomacropeptide for nutritional management of phenylketonuria:a randomized,controlled,crossover trial[J].Am J Clin Nutr,2016,104(2):334-345.
[9]李龙,蒋海丽,努尔亚,等.2010年~2013年新疆南部五地州新生儿疾病筛查结果及随访情况分析[J].中国优生与遗传杂志,2015,23(8):84-86.
[10]Blau N,Longo N.Alternative therapies to address the unmet medical needs of patients with phenylketonuria[J].Expert Opin Pharmacother,2015,16(6):791-800.
[11]曹春红,杨小艳,郑晶晶.2002~2016年西安市苯丙酮尿症儿童跟踪随访研究[J].中国妇幼保健,2017,32(17):4148-4150.
[12]李松,孙巧玲,吴秋云,等.安徽省苯丙酮尿症患儿监护人生活质量与社会支持典型相关分析[J].中国卫生统计,2017,34(2):207-209.
[13]刘风燕.家长社会状况对苯丙酮尿症患儿治疗依从性的影响[J].泰山医学院学报,2017,38(3):276-278.
[14]刘翛然,陈曦,夏燕,等.新疆地区经典型苯丙酮尿症患儿治疗依从性影响因素分析[J].中国儿童保健杂志,2016,24(2):213-216.
[15]曹春红,杨小艳,陈焱.西安市苯丙酮尿症患儿家长心理健康与患儿治疗依从性相关性分析[J].中国儿童保健杂志,2016,24(11):1200-1202.
[16]李松,孙巧玲,周怡,等.安徽省苯丙酮尿症患儿监护人的社会支持状况调查分析[J].现代预防医学,2016,43(15):2774-2789.
[17]李松,孙巧玲,周怡,等.安徽省苯丙酮尿症患儿监护人的生活质量调查分析[J].中国妇幼保健,2016,31(20):4256-4259.
[18]赵桂杰,孙晶华.新生儿苯丙酮尿症筛查与治疗随访[J].中国妇幼保健,2015,30(36):6540-6542.
[19]杨曦,何江,余伍忠.新疆94951例新生儿疾病筛查及随访结果分析[J].临床儿科杂志,2015,33(1):92-93.
[2]邱婷.苯丙酮尿症患者生活质量研究进展[J].国际儿科学杂志,2017,44(8):544-546.
[3]张燕,绳宇.恶性骨肿瘤患儿生活质量及影响因素的研究[J].中华护理杂志,2015,50(4):423-427.
[4]中华人民共和国卫生部.《卫生部新生儿疾病筛查技术规范》[S].2010版.北京:中华人民共和国卫生部,2010.
[5]华健,郑慕时.0~6岁发育筛查测验的编制[J].中华儿科杂志,1992(2):84-85.
[6]张厚粲.韦氏儿童智力量表第四版(WISC-IV)中文版的修订[J].心理科学,2009(5):1177-1179.
[7]汪向东,王希林,马弘.心理卫生评定量表手册(增订版)[M].北京:中国心理卫生杂志社,1999:73-81.
[8]Ney DM,Stroup BM,Clayton MK,et al.Glycomacropeptide for nutritional management of phenylketonuria:a randomized,controlled,crossover trial[J].Am J Clin Nutr,2016,104(2):334-345.
[9]李龙,蒋海丽,努尔亚,等.2010年~2013年新疆南部五地州新生儿疾病筛查结果及随访情况分析[J].中国优生与遗传杂志,2015,23(8):84-86.
[10]Blau N,Longo N.Alternative therapies to address the unmet medical needs of patients with phenylketonuria[J].Expert Opin Pharmacother,2015,16(6):791-800.
[11]曹春红,杨小艳,郑晶晶.2002~2016年西安市苯丙酮尿症儿童跟踪随访研究[J].中国妇幼保健,2017,32(17):4148-4150.
[12]李松,孙巧玲,吴秋云,等.安徽省苯丙酮尿症患儿监护人生活质量与社会支持典型相关分析[J].中国卫生统计,2017,34(2):207-209.
[13]刘风燕.家长社会状况对苯丙酮尿症患儿治疗依从性的影响[J].泰山医学院学报,2017,38(3):276-278.
[14]刘翛然,陈曦,夏燕,等.新疆地区经典型苯丙酮尿症患儿治疗依从性影响因素分析[J].中国儿童保健杂志,2016,24(2):213-216.
[15]曹春红,杨小艳,陈焱.西安市苯丙酮尿症患儿家长心理健康与患儿治疗依从性相关性分析[J].中国儿童保健杂志,2016,24(11):1200-1202.
[16]李松,孙巧玲,周怡,等.安徽省苯丙酮尿症患儿监护人的社会支持状况调查分析[J].现代预防医学,2016,43(15):2774-2789.
[17]李松,孙巧玲,周怡,等.安徽省苯丙酮尿症患儿监护人的生活质量调查分析[J].中国妇幼保健,2016,31(20):4256-4259.
[18]赵桂杰,孙晶华.新生儿苯丙酮尿症筛查与治疗随访[J].中国妇幼保健,2015,30(36):6540-6542.
[19]杨曦,何江,余伍忠.新疆94951例新生儿疾病筛查及随访结果分析[J].临床儿科杂志,2015,33(1):92-93.