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本文引用的文献

1
Health-Related Quality of Life in Patients after Repair of Esophageal Atresia: A Review of Current Literature.食管闭锁修复术后患者的健康相关生活质量:当前文献综述
Eur J Pediatr Surg. 2020 Jun;30(3):239-250. doi: 10.1055/s-0040-1710389. Epub 2020 May 29.
2
Agreement between mothers', fathers', and children's' ratings on health-related quality of life in children born with esophageal atresia - a German cross-sectional study.母亲、父亲和儿童在患有食管闭锁的儿童的健康相关生活质量评估上的一致性 - 一项德国横断面研究。
BMC Pediatr. 2019 Sep 11;19(1):330. doi: 10.1186/s12887-019-1701-6.
3
Generic Health-Related Quality of Life after Repair of Esophageal Atresia and Its Determinants within a German-Swedish Cohort.德国-瑞典队列中食管闭锁修复术后的一般健康相关生活质量及其决定因素
Eur J Pediatr Surg. 2019 Feb;29(1):75-84. doi: 10.1055/s-0038-1672144. Epub 2018 Sep 27.
4
Long-term Quality of Life in Neonatal Surgical Disease.新生儿外科疾病的长期生活质量。
Ann Surg. 2018 Sep;268(3):497-505. doi: 10.1097/SLA.0000000000002918.
5
The Esophageal-Atresia-Quality-of-life Questionnaires: Feasibility, Validity and Reliability in Sweden and Germany.《食管闭锁-生活质量问卷》:在瑞典和德国的可行性、有效性和可靠性。
J Pediatr Gastroenterol Nutr. 2018 Oct;67(4):469-477. doi: 10.1097/MPG.0000000000002019.
6
Infants Born with Esophageal Atresia with or without Tracheo-Esophageal Fistula: Short- and Long-Term Outcomes.患有或不患有气管食管瘘的食管闭锁患儿:短期和长期预后
Isr Med Assoc J. 2018 Mar;20(3):161-166.
7
Development and pilot-testing of a condition-specific instrument to assess the quality-of-life in children and adolescents born with esophageal atresia.一种用于评估先天性食管闭锁患儿及青少年生活质量的特定疾病评估工具的开发与预试验。
Dis Esophagus. 2017 Jul 1;30(7):1-9. doi: 10.1093/dote/dox017.
8
Paediatric health-related quality of life: what is it and why should we measure it?儿童健康相关生活质量:它是什么以及我们为何要对其进行测量?
Arch Dis Child. 2017 May;102(5):393-400. doi: 10.1136/archdischild-2015-310068. Epub 2016 Oct 6.
9
ASPECTS OF PATIENT REPORTED OUTCOMES IN RARE DISEASES: A DISCUSSION PAPER.罕见病患者报告结局的相关方面:一篇讨论文件
Int J Technol Assess Health Care. 2016 Jan;32(3):126-30. doi: 10.1017/S0266462316000271. Epub 2016 Aug 15.
10
Health-related quality of life among children, young people and adults with esophageal atresia: a review of the literature and recommendations for future research.食管闭锁患儿、青少年及成人的健康相关生活质量:文献综述及对未来研究的建议
Qual Life Res. 2015 Oct;24(10):2433-45. doi: 10.1007/s11136-015-0975-x. Epub 2015 Apr 1.

《土耳其版食管闭锁症生存质量问卷评估先天性食管闭锁患儿和青少年生存质量的可行性、信度和效度》

Feasibility, Reliability, and Validity of the Turkish Version of the Esophageal-Atresia-Quality-of-Life Questionnaires to Assess Condition-Specific Quality of Life in Children and Adolescents Born with Esophageal Atresia.

机构信息

Department of Pediatric Surgery, Faculty of Medicine, Hacettepe University, Ankara, Turkey.

Hacettepe University, Institute of Public Health, Ankara, Turkey.

出版信息

Turk J Gastroenterol. 2021 Aug;32(8):640-650. doi: 10.5152/tjg.2021.201005.

DOI:10.5152/tjg.2021.201005
PMID:34528877
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC8975496/
Abstract

BACKGROUND

This study reports the feasibility, validity and reliability of the Turkish versions of the Esophageal-Atresia-Quality-of-Life (EA-QOL) questionnaires, which were originally developed in Sweden and Germany.

METHODS

After translation from Swedish to Turkish and cognitive debriefings, 51 families of children aged 2 to 7 years (parent-report, 17-items) and 54 families of children 8 to 17 years (child and parent-report, 24-items) responded to the EA-QOL questionnaires and a validated generic HRQOL-instrument (PedsQL4.0). Medical records of patients and questionnaires were used to obtain clinical data. The Turkish version of the EA-QOL questionnaires were evaluated for feasibility (<5% missing item responses), reliability (internal consistency/retest reliability for 3 weeks) and validity (known-groups/concurrent/convergent). Level of significance was p<0.05.

RESULTS

Feasibility of the Turkish version of the EA-QOL questionnaires was good. Internal consistency of all scales was satisfactory, as were the level of agreements of EA-QOL scores between the field- and retest study. Known-group and concurrent validity were achieved since the EA-QOL questionnaires showed that esophageal symptoms and feeding difficulties were negatively associated with EA-QOL total scores in both age specific versions (child-and parent report), and respiratory symptoms in the version for EA children 2 to 7 years (parent-report). A higher number of respiratory symptoms decreased the EA-QOL total scores in both age groups (parent-report, p<0.05). Correlations between the EA-QOL total scores and PedsQL-4.0 total scores supported convergent validity.

CONCLUSION

The Turkish version of the EA-QOL questionnaires are feasible, valid and reliable to assess condition-specific HRQOL in EA children.

摘要

背景

本研究报告了最初在瑞典和德国开发的食管-气道质量(EA-QOL)问卷的土耳其语版本的可行性、有效性和可靠性。

方法

在从瑞典语翻译成土耳其语并进行认知审阅后,51 名 2 至 7 岁儿童的家长(报告,17 项)和 54 名 8 至 17 岁儿童的家长和儿童(报告,24 项)对 EA-QOL 问卷和经过验证的通用 HRQOL 工具(PedsQL4.0)做出了回应。患者的病历和问卷被用于获取临床数据。评估了 EA-QOL 问卷的土耳其语版本的可行性(<5%缺失项目答复)、可靠性(3 周内的内部一致性/重测信度)和有效性(已知组/同期/收敛)。显著性水平为 p<0.05。

结果

EA-QOL 问卷的土耳其语版本具有良好的可行性。所有量表的内部一致性都令人满意,EA-QOL 评分在现场研究和重测研究之间的一致性也令人满意。已知组和同期有效性得到了实现,因为 EA-QOL 问卷显示,食管症状和进食困难与两个年龄特定版本(儿童和家长报告)的 EA-QOL 总分呈负相关,而在 2 至 7 岁 EA 儿童的版本中(家长报告),呼吸症状与 EA-QOL 总分呈负相关。在两个年龄组中,呼吸症状越多,EA-QOL 总分越低(家长报告,p<0.05)。EA-QOL 总分与 PedsQL-4.0 总分之间的相关性支持收敛有效性。

结论

EA-QOL 问卷的土耳其语版本在评估 EA 儿童的特定疾病 HRQOL 方面是可行、有效和可靠的。