Dellenmark-Blom Michaela, Quitmann Julia, Dingemann Jens, Witt Stefanie, Ure Benno M, Bullinger Monika, Jönsson Linus, Gatzinsky Vladimir, Dingemann Carmen
Department of Pediatrics, Institute of Clinical Sciences, University of Gothenburg, Gothenburg, Sweden.
Department of Pediatric Surgery, The Queen Silvia Children's Hospital, Gothenburg, Sweden.
Eur J Pediatr Surg. 2020 Feb;30(1):96-103. doi: 10.1055/s-0039-1693729. Epub 2019 Jul 25.
We aimed to identify clinical factors affecting condition-specific health related quality of life (HRQOL) domains in children born with esophageal atresia (EA). This can facilitate preventive care to risk groups of HRQOL impairments.
A total of 124 Swedish and German families of EA children answered the validated EA-QOL questionnaires (response rate 68%), for evaluation of three HRQOL domains in children 2 to 7 years old (53 parents) and four HRQOL domains in children 8 to 17 years old (62 children/71 parents). Clinical data were collected through medical records and a questionnaire. Statistics included between-group analysis, univariable and stepwise multivariable regression analysis, < 0.05.
Between 2 to 7 years, no primary anastomosis ( = 0.022) and female gender ( = 0.026) predicted worse scores related to "physical health and treatment," and gastrostomy insertion related to "eating" ( = 0.0001), and "social isolation and stress" ( = 0.001). Between 8 to 17 years, no primary anastomosis (child report), prematurity, esophageal dilatation (parent report) predicted poor HRQOL related to "eating" ( < 0.05), associated anomalies to "body perception" ( = 0.031, parent report), female gender ( = 0.018, child report) and severe EA ( = 0.011 child report, = 0.004 parent report) to "social relationships," and severe EA predicted worse "health and well-being" scores ( = 0.004, parent report). An increased number of digestive symptoms (difficulty swallowing food, heartburn, and vomiting), lowered all EA-QOL domain scores in both age groups ( < 0.001). An increased number of respiratory problems (cough, wheezing, airway infections. breathlessness, and chest tightness), lowered scores in two HRQOL domains among children 2 to 7 years ( < 0.05).
Impairments within condition-specific HRQOL domains in EA children are found in congenital and surgical subgroups, and notably related to digestive symptoms throughout childhood.
我们旨在确定影响食管闭锁（EA）患儿特定疾病健康相关生活质量（HRQOL）领域的临床因素。这有助于对HRQOL受损风险群体进行预防性护理。
共有124个瑞典和德国家庭的EA患儿家长回答了经过验证的EA-QOL问卷（回复率68%），用于评估2至7岁儿童的三个HRQOL领域（53名家长）以及8至17岁儿童的四个HRQOL领域（62名儿童/71名家长）。通过病历和问卷收集临床数据。统计分析包括组间分析、单变量和逐步多变量回归分析，P<0.05。
在2至7岁儿童中，未进行一期吻合术（P=0.022）和女性性别（P=0.026）预示着与“身体健康和治疗”相关的得分较差，胃造口术的插入与“进食”（P=0.0001）以及“社交隔离和压力”（P=0.001）相关。在8至17岁儿童中，未进行一期吻合术（儿童报告）、早产、食管扩张（家长报告）预示着与“进食”相关的HRQOL较差（P<0.05），相关畸形与“身体感知”相关（P=0.031，家长报告），女性性别（P=0.018，儿童报告）以及严重EA与“社会关系”相关（P=0.011，儿童报告；P=0.004，家长报告），严重EA预示着“健康和幸福”得分更差（P=0.004，家长报告）。消化症状数量增加（吞咽食物困难、烧心和呕吐），在两个年龄组中均降低了所有EA-QOL领域得分（P<0.001）。呼吸问题数量增加（咳嗽、喘息、气道感染、呼吸急促和胸闷），降低了2至7岁儿童中两个HRQOL领域的得分（P<0.05）。
在先天性和手术亚组中发现EA患儿特定疾病HRQOL领域存在损害，并且在整个儿童期尤其与消化症状相关。
