Long term functional outcomes and health-related quality of life in patients with esophageal atresia - A tertiary centre experience.

IF 2.5 2区 医学 Q1 PEDIATRICS
Venus Tsz Ling Kum, Carol Wing Yan Wong, Kenneth Kak Yuen Wong
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Abstract

Purpose: This study evaluates the clinical outcomes and compares the quality of life in esophageal atresia patients over the past two decades.

Method: Medical records of all esophageal atresia (EA) patients who received surgical repair between 1997 and 2022 in a tertiary center were reviewed to assess for associated anomalies and complications. Both patients and parents were invited to participate in health-related quality of life (HRQOL) studies either in person, via phone or online. The Pediatric Quality of Life Inventory Generic (Peds-QL) Core Scale Version 4.0 and Gastrointestinal Quality of Life Index (GIQLI) were used as generic and system-specific assessment tools respectively. Numeric values were expressed in medians (interquartile range).

Results: A total of 31 patients were eligible for the study. The median birth weight was 2.47 kg (1.93-3.08). The smallest patient had a birth weight of 1.36 kg. Primary repair was performed in 28 (90.3 %) patients. Anastomotic leak was reported in two (6.45 %) patients, both of them requiring revision surgery. Repeated endoscopic dilatation was required in 11 (35.5 %) patients and seven (22.6 %) required anti-reflux procedures. For the HRQOL assessment, our cohort of patients showed an overall score of 76.1 (62-93.5), physical score of 90.6 (68.8-100) and psychosocial score of 63.3 (56.7-91.7) when using the generic Peds-QL questionnaire. When using the system-specific GIQLI, they scored 120 (106.8-128). EA patients show significantly poor HRQOL as reflected in both generic and system-specific questionnaires.

Conclusion: Long term survivors of esophageal atresia demonstrated inferior HRQOL compared to normal population in both generic and system-specific assessment tools. Life-long follow-up and monitoring are essential in order to provide holistic care to these patients.

食道闭锁患者的长期功能结局和健康相关生活质量——三级中心经验
目的:本研究评估近20年来食道闭锁患者的临床结果并比较其生活质量。方法:回顾1997-2022年在某三级中心接受手术修复的所有食管闭锁(EA)患者的医疗记录,评估相关异常和并发症。患者和家长都被邀请亲自、通过电话或在线参与与健康相关的生活质量(HRQOL)研究。分别采用儿科生活质量量表通用版(Peds-QL)核心量表4.0版和胃肠道生活质量指数(GIQLI)作为通用和系统特异性评估工具。数值以中位数(四分位数范围)表示。结果:共有31例患者符合研究条件。出生体重中位数为2.47kg(1.93-3.08)。最小的患者出生体重为1.36公斤。28例(90.3%)患者进行了一期修复。吻合口漏2例(6.45%),均需行翻修手术。11例(35.5%)患者需要重复内镜扩张,7例(22.6%)患者需要抗反流手术。对于HRQOL评估,我们的患者队列在使用通用Peds-QL问卷时显示总分为76.1(62-93.5),身体评分为90.6(68.8-100),心理社会评分为63.3(56.7-91.7)。当使用系统特定的GIQLI时,他们的得分为120(106.8-128)。EA患者的HRQOL明显较差,这反映在通用问卷和系统特定问卷中。结论:在通用和系统特异性评估工具中,食管闭锁长期幸存者的HRQOL均低于正常人群。为了向这些患者提供全面护理,终身随访和监测是必不可少的。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
CiteScore
1.10
自引率
12.50%
发文量
569
审稿时长
38 days
期刊介绍: The journal presents original contributions as well as a complete international abstracts section and other special departments to provide the most current source of information and references in pediatric surgery. The journal is based on the need to improve the surgical care of infants and children, not only through advances in physiology, pathology and surgical techniques, but also by attention to the unique emotional and physical needs of the young patient.
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