遗传代谢病儿童肝移植受者术后生活质量调查研究

Investigation on the quality of life after liver transplantation in children with genetic metabolic diseases

目的调查遗传代谢病患儿肝移植术后生活质量现状,为医护人员制订术后健康教育方案提供依据,提高遗传代谢病患儿肝移植术后生活质量。方法选取2021年10月至2022年3月在上海交通大学医学院附属仁济医院进行随访的65例遗传代谢病儿童肝移植受者进行现场问卷调查。调查问卷包括一般资料调查表和中文版儿童生活质量量表3.0(PedsQL™3.0)移植模块。正态分布计量资料比较采用成组t检验或方差分析,非正态分布计量资料比较采用Kruskal-Wallis或Mann-Whitney检验;采用多元线性回归分析遗传代谢病患儿肝移植术后生活质量影响因素。结果65例遗传代谢病患儿肝移植术后中文版PedsQL™3.0移植模块总分为(65±16)分,"服药"、"疼痛"和"交流问题"3个维度得分最高,"服药"和"交流问题"分别为75(67,92)分和75(56,88)分,"疼痛"为(77±16)分。"对治疗的焦虑"维度得分最低,为(51±25)分。女童"担忧"维度得分高于男童,差异有统计学意义(t=-2.079,P<0.05)。活体肝移植患儿"移植与他人关系"及"担忧"维度得分均高于公民逝世后器官捐献肝移植患儿,差异有统计学意义(t=-2.353和-1.176,P均<0.05)。居住在一线城市患儿"对治疗的焦虑"维度得分高于居住在非一线城市患儿,差异有统计学意义(t=-2.190,P<0.05)。多元线性回归分析结果显示,是否居住在一线城市是遗传代谢病患儿肝移植术后生活质量的影响因素(P<0.05)。结论遗传代谢病患儿肝移植术后生活质量有待提高,是否居住于一线城市是影响因素。

Objective To investigate the status of quality of life after liver transplantation in children with genetic metabolic diseases,and to provide a basis for medical staff to develop postoperative health education plans,and also to improve the quality of life of this population.Methods The convenient sampling method was used to collect data by questionnaire from 65 children diagnosed with genetic metabolic diseases who received liver transplantation in Renji Hospital,Shanghai Jiao Tong University School of Medicine From October 2021 to March 2022.The questionnaire consisted of general information survey and Pediatric Quality of Life Inventoru(PedsQL™3.0)transplantation module.The normally distributed measurement data were compared with group t-test or analysis of variance,while the comparison of non-normally distributed measurement data adopted Kruskal-Wallis or Mann-Whitney test.Using multiple linear regression to analyze the factors affecting the quality of life in children with genetic metabolic diseases after liver transplantation.Results The total score of the PedQL™3.0 transplantation module of 65 children with genetic metabolic disorders after liver transplantation was(65±16),with the highest scores in the three dimensions of"medication","pain",and"communication problems".The scores for"medication"and"communication problems"were 75(67,92)and 75(56,88),respectively,and the scores for"pain"were(77±16).The score for the dimension of"anxiety towards treatment"is the lowest,at(51±25)points.Girls scored higher in the dimension of"worry"than boys,and the difference was statistically significant(t=-2.079,P<0.05).The scores of the dimensions of"relationship between transplantation and others"and"worry"in children undergoing living donor liver transplantation were higher than those in children undergoing organ donation after the death of citizens liver transplantation,and the differences were statistically significant(t=-2.353 and-1.176,P all<0.05).Children living in first tier cities scored higher in the dimension of"anxiety towards treatment"than those living in non-first tier cities,and the difference was statistically significant(t=-2.190,P<0.05).The results of multiple linear regression analysis showed that living in first tier cities was a factor affecting the quality of life of children with genetic metabolic diseases after liver transplantation(P<0.05).Conclusions The quality of life of children with genetic metabolic diseases after liver transplantation needs to be improved,and whether they live in first tier cities is a influencing factor.