Northwestern University Feinberg School of Medicine, Chicago, IL.
Division of Gastroenterology, Hepatology and Nutrition, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL.
Liver Transpl. 2020 Jan;26(1):45-56. doi: 10.1002/lt.25634. Epub 2019 Nov 6.
The goal of this work was to examine the change in health-related quality of life (HRQOL) and cognitive functioning from early childhood to adolescence in pediatric liver transplantation (LT) recipients. Patients were recruited from 8 North American centers through the Studies of Pediatric Liver Transplantation consortium. A total of 79 participants, ages 11-18 years, previously tested at age 5-6 years in the Functional Outcomes Group study were identified as surviving most recent LT by 2 years and in stable medical follow-up. The Pediatric Quality of Life 4.0 Generic Core Scale, Pediatric Quality of Life Cognitive Function Scale, and PROMIS Pediatric Cognitive Function tool were distributed to families electronically. Data were analyzed using repeated measures and paired t tests. Predictive variables were analyzed using univariate regression analysis. Of the 69 families contacted, 65 (94.2%) parents and 61 (88.4%) children completed surveys. Median age of participants was 16.1 years (range, 12.9-18.0 years), 55.4% were female, 33.8% were nonwhite, and 84.0% of primary caregivers had received at least some college education. Median age at LT was 1.1 years (range, 0.1-4.8 years). The majority of participants (86.2%) were not hospitalized in the last year. According to parents, adolescents had worse HRQOL and cognitive functioning compared with healthy children in all domains. Adolescents reported HRQOL similar to healthy children in all domains except psychosocial, school, and cognitive functioning (P = 0.02; P < 0.001; P = 0.04). Participants showed no improvement in HRQOL or cognitive functioning over time. For cognitive and school functioning, 60.0% and 50.8% of parents reported "poor" functioning, respectively (>1 standard deviation below the healthy mean). Deficits in HRQOL seem to persist in adolescence. Over half of adolescent LT recipients appear to be at risk for poor school and cognitive functioning, likely reflecting attention and executive function deficits.
本研究旨在探讨儿科肝移植（LT）受者从幼儿期到青春期健康相关生活质量（HRQOL）和认知功能的变化。通过北美 8 个中心的研究儿科肝移植联盟，招募了 79 名年龄在 11-18 岁的患者，他们在功能结果组研究中，年龄在 5-6 岁时接受了测试，被确定为最近 2 年内 LT 存活且处于稳定的医疗随访中。儿童生活质量 4.0 通用核心量表、儿童生活质量认知功能量表和 PROMIS 儿童认知功能工具以电子方式分发给家属。使用重复测量和配对 t 检验分析数据。使用单变量回归分析对预测变量进行分析。在联系的 69 个家庭中，65 个（94.2%）父母和 61 个（88.4%）孩子完成了调查。参与者的中位年龄为 16.1 岁（范围，12.9-18.0 岁），55.4%为女性，33.8%为非白人，84.0%的主要照顾者至少接受过一些大学教育。LT 的中位年龄为 1.1 岁（范围，0.1-4.8 岁）。大多数参与者（86.2%）在过去一年中没有住院。根据父母的说法，在所有领域，青少年的 HRQOL 和认知功能都比健康儿童差。青少年在除心理社会、学校和认知功能外的所有领域报告的 HRQOL 与健康儿童相似（P=0.02；P<0.001；P=0.04）。参与者在时间上没有显示出 HRQOL 或认知功能的改善。对于认知和学校功能，分别有 60.0%和 50.8%的父母报告功能“差”（低于健康均值 1 个标准差以上）。HRQOL 缺陷似乎在青春期持续存在。超过一半的青少年 LT 受者似乎有出现认知和学校功能不良的风险，这可能反映了注意力和执行功能缺陷。
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