caa a22 4500 606179356 CHVBK 20210128100800.0 cr unu---uuuuu 210128e20151001xx s 000 0 eng 10.1007/s11136-015-0975-x doi (NATIONALLICENCE)springer-10.1007/s11136-015-0975-x Health-related quality of life among children, young people and adults with esophageal atresia: a review of the literature and recommendations for future research [Elektronische Daten] [Michaela Dellenmark-Blom, John Chaplin, Vladimir Gatzinsky, Linus Jönsson, Kate Abrahamson] 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. Springer International Publishing Switzerland, 2015 Esophageal atresia nationallicence Congenital malformation nationallicence Rare medical health condition nationallicence Quality of life nationallicence Health-related quality of life nationallicence Review nationallicence EA : Esophageal atresia, an interrupted esophagus without any connection to the stomach nationallicence CHQ : Child Health Questionnaire nationallicence CI : Colon interposition for esophageal replacement nationallicence ES : Effect size nationallicence EORTC : European Organization into Research and Treatment of Cancer nationallicence GER : Gastro-esophageal reflux nationallicence GERD : Gastro-esophageal reflux disease nationallicence GIQLI : Gastro Intestinal Quality of Life Index nationallicence GT : Gastric transposition for esophageal replacement nationallicence HRQOL : Health-related quality of life nationallicence ICQ : Illness Cognition Questionnaire nationallicence KPS : Karnofsky Performance Status nationallicence MCS : Mental component summary nationallicence PEDSQL : Pediatric Quality of Life Inventory nationallicence PCS : Physical component summary nationallicence RSRQLI : Respiratory Symptoms-Related Quality of Life Index nationallicence SAC : Scientific Advisory Committee of the Medical Outcomes Trust nationallicence SAQ : Strategy and Attribution Questionnaire nationallicence SF-36 : 36-Item Short Form Survey from the RAND Medical Outcomes Study nationallicence Spitzer QL Index : Spitzer Quality of Life Index nationallicence TEF : Tracheoesophageal fistula, a connection between the esophagus and the windpipe nationallicence VAS/Uniscale : Visual Analogue Scale/Uniscale for overall HRQOL nationallicence WHO-5 : World Health Organization-5 Well-Being Index nationallicence Dellenmark-Blom Michaela Department of Pediatric Surgery, The Queen Silvia Children's Hospital, Sahlgrenska University Hospital, 416 85, Gothenburg, Sweden aut Chaplin John Gothenburg Pediatric Growth Research Center (GPGRC), Department of Pediatrics, Institute of Clinical Sciences, Gothenburg University, 416 85, Gothenburg, Sweden aut Gatzinsky Vladimir Department of Pediatric Surgery, The Queen Silvia Children's Hospital, Sahlgrenska University Hospital, 416 85, Gothenburg, Sweden aut Jönsson Linus Department of Pediatric Surgery, The Queen Silvia Children's Hospital, Sahlgrenska University Hospital, 416 85, Gothenburg, Sweden aut Abrahamson Kate Department of Pediatric Surgery, The Queen Silvia Children's Hospital, Sahlgrenska University Hospital, 416 85, Gothenburg, Sweden aut Quality of Life Research Springer International Publishing 24/10(2015-10-01), 2433-2445 0962-9343 24:10<2433 2015 24 11136 https://doi.org/10.1007/s11136-015-0975-x text/html Onlinezugriff via DOI BK010053 XK010053 XK010000 Metadata rights reserved Springer special CC-BY-NC licence nationallicence 1 review-article jats NATIONALLICENCE NATIONALLICENCE NL-springer NATIONALLICENCE 856 40 https://doi.org/10.1007/s11136-015-0975-x text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Dellenmark-Blom Michaela Department of Pediatric Surgery, The Queen Silvia Children's Hospital, Sahlgrenska University Hospital, 416 85, Gothenburg, Sweden aut NATIONALLICENCE 700 1- Chaplin John Gothenburg Pediatric Growth Research Center (GPGRC), Department of Pediatrics, Institute of Clinical Sciences, Gothenburg University, 416 85, Gothenburg, Sweden aut NATIONALLICENCE 700 1- Gatzinsky Vladimir Department of Pediatric Surgery, The Queen Silvia Children's Hospital, Sahlgrenska University Hospital, 416 85, Gothenburg, Sweden aut NATIONALLICENCE 700 1- Jönsson Linus Department of Pediatric Surgery, The Queen Silvia Children's Hospital, Sahlgrenska University Hospital, 416 85, Gothenburg, Sweden aut NATIONALLICENCE 700 1- Abrahamson Kate Department of Pediatric Surgery, The Queen Silvia Children's Hospital, Sahlgrenska University Hospital, 416 85, Gothenburg, Sweden aut NATIONALLICENCE 773 0- Quality of Life Research Springer International Publishing 24/10(2015-10-01), 2433-2445 0962-9343 24:10<2433 2015 24 11136