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

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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.

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Abbreviations

EA:

Esophageal atresia, an interrupted esophagus without any connection to the stomach

CHQ:

Child Health Questionnaire

CI:

Colon interposition for esophageal replacement

ES:

Effect size

EORTC:

European Organization into Research and Treatment of Cancer

GER:

Gastro-esophageal reflux

GERD:

Gastro-esophageal reflux disease

GIQLI:

Gastro Intestinal Quality of Life Index

GT:

Gastric transposition for esophageal replacement

HRQOL:

Health-related quality of life

ICQ:

Illness Cognition Questionnaire

KPS:

Karnofsky Performance Status

MCS:

Mental component summary

PEDSQL:

Pediatric Quality of Life Inventory

PCS:

Physical component summary

RSRQLI:

Respiratory Symptoms-Related Quality of Life Index

SAC:

Scientific Advisory Committee of the Medical Outcomes Trust

SAQ:

Strategy and Attribution Questionnaire

SF-36:

36-Item Short Form Survey from the RAND Medical Outcomes Study

Spitzer QL Index:

Spitzer Quality of Life Index

TEF:

Tracheoesophageal fistula, a connection between the esophagus and the windpipe

VAS/Uniscale:

Visual Analogue Scale/Uniscale for overall HRQOL

WHO-5:

World Health Organization-5 Well-Being Index

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Acknowledgments

The study was funded by The Queen Silvia Children’s Foundation, The Mayflower Charity Foundation for Children, the Petter Silfverskiöld Memory Foundation and the Mary von Sydow Foundation.

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The authors report no conflict of interest.

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Authors and Affiliations

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

    Michaela Dellenmark-Blom, Vladimir Gatzinsky, Linus Jönsson & Kate Abrahamson

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

    John Eric Chaplin

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  1. Michaela Dellenmark-Blom
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  2. John Eric Chaplin
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  3. Vladimir Gatzinsky
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Correspondence to Michaela Dellenmark-Blom.

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Dellenmark-Blom, M., Chaplin, J.E., Gatzinsky, V. et al. Health-related quality of life among children, young people and adults with esophageal atresia: a review of the literature and recommendations for future research. Qual Life Res 24, 2433–2445 (2015). https://doi.org/10.1007/s11136-015-0975-x

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