探究长期存活(≥5年)的儿童肝移植受者生存和睡眠质量及其影响因素。

采用儿童生存质量量表3.0(PedsQL? 3.0)移植模块和儿童睡眠质量调查问卷调查2006年1月至2013年6月在上海交通大学医学院附属仁济医院肝脏外科接受肝移植术后存活5年以上的30例儿童受者生存和睡眠质量。采用电子邮件发送并回收调查问卷，调查问卷均由家长填写。调查问卷发放时间为2018年6月第1周，回收时间为6月第2周。采用成组t检验比较不同性别和供肝来源儿童受者生存质量得分，采用单因素方差分析比较不同血型儿童受者生存质量得分。采用Mann－Whitney U检验比较不同性别和供肝来源儿童受者睡眠质量得分，采用Kruskal－Wallis检验比较不同血型儿童受者睡眠质量得分。P<0.05为差异有统计学意义。

实际回收有效问卷27份，其中男性14例，女性13例，移植和调查时中位年龄分别为11个月(5～12个月)、80个月(66～180个月)。27例受者平均身高、体质量、体质指数分别为(127±13)cm、(25±6)kg、(15.7±1.9)kg/m²。27例受者生存质量总分为(73±14)分，其中药物依从性、药物不良反应、移植后社会关系、疼痛、对健康状况的担忧、对治疗的焦虑、对外貌的自我感觉和交流问题8个维度得分分别为(82±13)、(78±17)、(71±16)、(72±19)、(56±28)、(67±28)、(68±21)和(80±16)分。睡眠质量总分中位数为0.23分(0～0.63)分，其中打鼾、日间过度嗜睡、行为和睡眠相关性呼吸问题4个维度得分中位数分别为0.22分(0～0.78分)、0.14分(0～0.57分)、0.50分(0～1.00分)和0.25分(0～0.50分)。不同性别、血型和供肝来源儿童受者生存和睡眠质量得分差异均无统计学意义(P均>0.05)。

肝移植术后存活5年以上儿童受者生存和睡眠质量尚可，性别、血型和供肝来源均不是生存和睡眠质量的影响因素。

This research was designed to inverstigate the life and sleepness quality of pediatric liver transplant recipients who survived more than 5 years after liver transplantation.

Pediatric Quality of Life Inventory? 3.0 (PedsQL? 3.0) transplant module and pediatric sleep questionnaire were used to evaluated the life and sleepness quality of pediatric liver transplant recipients (n=30) who got liver transplantation during January 2006 and June 2013 in the Department of Hepatic Surgery, Renji Hospital, School of Medicine, Shanghai Jiaotong University. All the questionnaires were sended and recycleed by email during the first and second week of June 2018, respectively, and finished by the parents of the pediatric liver transplant recipients. The scores of life quality of recipients among different gender and source of donor liver were compared by t test. One-way analysis of variance was used to compared the scores of life quality of recipients among different blood type. Mann-whitney U test was used to compared the scores of sleepness quality of recipients among different gender and source of donor liver, Kruskal-Wallis test was used to compared the scores of sleepness quality of recipients among different blood types. P<0.05 was considered statistically significant.

27 valid questionnaires (14 cases were male and 13 cases were female) were obtained. The median age of recipients when transplantation and survey were 11 months (5-12 months) and 80 months (66-180 months), respectively. The mean height, weight and body mass index of recipients were (127±13) cm, (25±6) kg, (15.7±1.9) kg/m². The total scores of life quality were (73±14), and the scores of medical regimen adherence, medication side effects, social relationships and transplant, physical discomfort, worries related to health status, treatment anxiety, how i look and communication were (82±13), (78±17), (71±16), (72±19), (56±28), (67±28), (68±21) and (80±16), respectively. The median total scores of sleepness quality were 0.23 (0-0.63), and the scores of snoring, excessive daytime sleepiness, behavior subscales and sleep-related symptoms were [0.22 (0-0.78)], [0.14 (0-0.57)], [0.50 (0-1.00)] and [0.25 (0-0.50)], respectively. The gender, blood type and source of donor liver had no effect on life and sleeping quality of pediatric liver transplant recipients (P all>0.05).

The life and sleeping quality of pediatric liver transplant recipients who survived more than 5 years were normal and the gender, blood type and source of donor liver were not the influence factors of life and sleeping quality.