Health-related quality of life in children with Hirschsprung disease and children with functional constipation: Parent-child variability.
Health-related quality of life in children with Hirschsprung disease and children with functional constipation: Parent-child variability.
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DOI：
10.1016/j.jpedsurg.2022.04.009
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发表时间：
2022-08
影响因子：
2.4
通讯作者：
Palermo, Tonya M.
中科院分区：
文献类型：
--
作者：
Tham, See Wan;Rollins, Michael D.;Reeder, Ron W.;Lewis, Katelyn E.;Calkins, Casey M.;Avansino, Jeffrey R.;Palermo, Tonya M.
关键词：
健康相关生活质量（HRQOL）是先天性巨结肠（HD）患儿的一个重要结局，但由于选择了比较组和受试者，在解释既往研究结果方面存在挑战。我们比较了HD儿童和功能性便秘（FC）儿童的父母代理与儿童自我报告HRQOL，并检查HRQOL的预测因素。126名儿童（5-18岁，60.3%男性，HD：n=52，FC：n=74）的数据来自儿科结直肠和盆腔学习联盟。收集人口统计学资料、临床变量、HRQOL（儿童生活质量量表，父母代表;儿童自我报告）和功能结局（贝勒尿失禁量表，克利夫兰临床控制评分系统）。两个队列的父母和孩子的HRQOL相似，身体功能得分较高，情绪和学校功能得分较低。对于HD儿童，人口统计学和临床变量在多变量回归模型中不能预测HRQOL。对于FC儿童，便秘严重程度越高，HRQOL越低（父母代表：B=-2.14，p<0.001;儿童：B=-1.75，p=0.001）。HD组的亲子HRQOL评分一致性为差至中度（组内相关性（ICC）=0.38-0.74），但FC组为中度至极佳（ICC=0.63-0.84）。此外，FC和≤10岁儿童的父母高估了儿童的HRQOL（比例OR 4.59（1.63，13.85）; p=0.004）。临床症状和人口统计学因素不能预测HD儿童的HRQOL，强调需要检查其他生物心理社会因素以了解长期HRQOL。HD儿童的亲子HRQOL一致性较低，表明获得父母和儿童观点的重要性。
Health-related quality of life (HRQOL) is an important outcome among children with Hirschsprung Disease (HD), but there are challenges in interpreting findings in previous studies due to the choice of a comparator group and informant. We compared parent-proxy versus child self-report HRQOL in children with HD to children with functional constipation (FC) and examined predictors of HRQOL. Data of 126 children (5–18 years, 60.3% male, HD: n=52, FC: n=74) were acquired from the Pediatric Colorectal and Pelvic Learning Consortium. Demographics, clinical variables, HRQOL (Pediatric Quality of Life Inventory parent-proxy; child self-report) and functional outcomes (Baylor Continence Scale, Cleveland Clinic Constipation Scoring System) were collected. Parent and child HRQOL was similar for both cohorts, with higher scores on physical functioning and lower scores on emotional and school functioning. For children with HD, demographics and clinical variables did not predict HRQOL in multivariable regression models. For children with FC, greater severity of constipation predicted lower HRQOL (parent-proxy: B=−2.14, p<0.001; child: B=−1.75, p=0.001). Parent-child agreement on HRQOL scores was poor to moderate in the HD group (intraclass correlations (ICC)=0.38–0.74), but moderate to excellent in the FC group (ICC=0.63–0.84). Furthermore, parents of children with FC and ≤10 years overestimated children’s HRQOL (proportional OR 4.59 (1.63, 13.85); p=0.004). Clinical symptoms and demographic factors did not predict HRQOL among children with HD, highlighting the need to examine other biopsychosocial factors to understand long-term HRQOL. Low parent-child HRQOL agreement in children with HD demonstrates the importance of obtaining parent and child perspectives.
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影响因子：
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作者：
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