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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

Health-related quality of life among children, young people and adults with esophageal atresia: a review of the literature and recommendations for future research.

作者信息

Dellenmark-Blom Michaela, Chaplin John Eric, Gatzinsky Vladimir, Jönsson Linus, Abrahamson Kate

机构信息

Department of Pediatric Surgery, The Queen Silvia Children's Hospital, Sahlgrenska University Hospital, 416 85, Gothenburg, Sweden.

Gothenburg Pediatric Growth Research Center (GPGRC), Department of Pediatrics, Institute of Clinical Sciences, Gothenburg University, 416 85, Gothenburg, Sweden.

出版信息

Qual Life Res. 2015 Oct;24(10):2433-45. doi: 10.1007/s11136-015-0975-x. Epub 2015 Apr 1.

DOI:10.1007/s11136-015-0975-x
PMID:25829227
Abstract

PURPOSE

Esophageal atresia (EA) is a rare congenital malformation requisite of surgical treatment. Survival rates have significantly increased in recent decades, but treated children are at risk of chronic morbidity. This study aims to review the literature on health-related quality of life (HRQOL) in patients with EA and describe the questionnaires used.

METHODS

A literature search was conducted in Pubmed, Cinahl and PsycINFO, from inception to January 2015. A meta-analysis of studies investigating HRQOL in patients with EA compared to healthy references was performed. The effect size was calculated as Cohen's d.

RESULTS

Twelve articles (published 1995-2014) describing HRQOL among children, young people and adults were identified. Only European studies were found, and these had variable sample sizes (8-128). Overall HRQOL was reported to be reduced in five of the seven studies that compared overall HRQOL with a healthy reference population. Impaired physical or general health was described in eight articles. In the meta-analysis, eight eligible studies provided 16 estimates of the effect of EA, six of which reached statistical significance for worse HRQOL (p < 0.05). Using Cohen's criteria, the pooled estimate of the effect of EA was small for overall and physical HRQOL, and <0.2 for the mental and social HRQOL components. Altogether, 15 different questionnaires were used, and none were condition specific for EA.

CONCLUSIONS

Different findings are reported; however, this study suggests that patients with EA may have a reduced HRQOL. Moreover, HRQOL is not adequately measured in this group. Additional research is required.

摘要

目的

食管闭锁(EA)是一种需要手术治疗的罕见先天性畸形。近几十年来,生存率显著提高,但接受治疗的儿童有患慢性疾病的风险。本研究旨在回顾关于EA患者健康相关生活质量(HRQOL)的文献,并描述所使用的问卷。

方法

在Pubmed、Cinahl和PsycINFO数据库中进行了从建库至2015年1月的文献检索。对调查EA患者与健康对照者HRQOL的研究进行了荟萃分析。效应量计算为科恩d值。

结果

共识别出12篇(发表于1995 - 至2014年)描述儿童、青少年和成人HRQOL的文章。仅发现欧洲的研究,且样本量各不相同(8 - 128)。在将总体HRQOL与健康对照人群进行比较的7项研究中,有5项报告总体HRQOL降低。8篇文章描述了身体或总体健康受损情况。在荟萃分析中,8项符合条件的研究提供了16个关于EA影响的估计值,其中6个在HRQOL较差方面达到统计学显著性(p < 0.05)。根据科恩标准,EA对总体和身体HRQOL的合并效应估计值较小,对心理和社会HRQOL成分的估计值<0.2。总共使用了15种不同的问卷,且没有一种是针对EA的特定问卷。

结论

报告了不同的研究结果;然而,本研究表明EA患者的HRQOL可能降低。此外,该组中HRQOL未得到充分测量。需要进一步的研究。

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