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Psychometric Performance of a Condition-Specific Quality-of-Life Instrument for Dutch Children Born with Esophageal Atresia

A condition-specific instrument (EA-QOL©) to assess quality of life of children born with esophageal atresia (EA) was developed in Sweden and Germany. Before implementing this in the Netherlands, we evaluated its psychometric performance in Dutch children. After Swedish–Dutch translation, cognitive...

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Autores principales: ten Kate, Chantal A., IJsselstijn, Hanneke, Dellenmark-Blom, Michaela, van Tuyll van Serooskerken, E. Sofie, Joosten, Maja, Wijnen, René M. H., van Wijk, Michiel P.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9600375/
https://www.ncbi.nlm.nih.gov/pubmed/36291444
http://dx.doi.org/10.3390/children9101508
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author ten Kate, Chantal A.
IJsselstijn, Hanneke
Dellenmark-Blom, Michaela
van Tuyll van Serooskerken, E. Sofie
Joosten, Maja
Wijnen, René M. H.
van Wijk, Michiel P.
author_facet ten Kate, Chantal A.
IJsselstijn, Hanneke
Dellenmark-Blom, Michaela
van Tuyll van Serooskerken, E. Sofie
Joosten, Maja
Wijnen, René M. H.
van Wijk, Michiel P.
author_sort ten Kate, Chantal A.
collection PubMed
description A condition-specific instrument (EA-QOL©) to assess quality of life of children born with esophageal atresia (EA) was developed in Sweden and Germany. Before implementing this in the Netherlands, we evaluated its psychometric performance in Dutch children. After Swedish–Dutch translation, cognitive debriefing was conducted with a subset of EA patients and their parents. Next, feasibility, reliability, and validity were evaluated in a nationwide field test. Cognitive debriefing confirmed the predefined concepts, although some questions were not generally applicable. Feasibility was poor to moderate. In 2-to-7-year-old children, 8/17 items had >5% missing values. In 8-to-17-year-old children, this concerned 3/24 items of the proxy-report and 5/14 items of the self-report. The internal reliability was good. The retest reliability showed good correlation. The comparison reliability between self-reports and proxy-reports was strong. The construct validity was discriminative. The convergent validity was strong for the 2-to-7-year-old proxy-report, and weak to moderate for the 8-to-17-year-old proxy-report and self-report. In conclusion, the Dutch-translated EA-QOL questionnaires showed good reliability and validity. Feasibility was likely affected by items not deemed applicable to an individual child’s situation. Computer adaptive testing could be a potential solution to customizing the questionnaire to the individual patient. Furthermore, cross-cultural validation studies and implementation-evaluation studies in different countries are needed.
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spelling pubmed-96003752022-10-27 Psychometric Performance of a Condition-Specific Quality-of-Life Instrument for Dutch Children Born with Esophageal Atresia ten Kate, Chantal A. IJsselstijn, Hanneke Dellenmark-Blom, Michaela van Tuyll van Serooskerken, E. Sofie Joosten, Maja Wijnen, René M. H. van Wijk, Michiel P. Children (Basel) Article A condition-specific instrument (EA-QOL©) to assess quality of life of children born with esophageal atresia (EA) was developed in Sweden and Germany. Before implementing this in the Netherlands, we evaluated its psychometric performance in Dutch children. After Swedish–Dutch translation, cognitive debriefing was conducted with a subset of EA patients and their parents. Next, feasibility, reliability, and validity were evaluated in a nationwide field test. Cognitive debriefing confirmed the predefined concepts, although some questions were not generally applicable. Feasibility was poor to moderate. In 2-to-7-year-old children, 8/17 items had >5% missing values. In 8-to-17-year-old children, this concerned 3/24 items of the proxy-report and 5/14 items of the self-report. The internal reliability was good. The retest reliability showed good correlation. The comparison reliability between self-reports and proxy-reports was strong. The construct validity was discriminative. The convergent validity was strong for the 2-to-7-year-old proxy-report, and weak to moderate for the 8-to-17-year-old proxy-report and self-report. In conclusion, the Dutch-translated EA-QOL questionnaires showed good reliability and validity. Feasibility was likely affected by items not deemed applicable to an individual child’s situation. Computer adaptive testing could be a potential solution to customizing the questionnaire to the individual patient. Furthermore, cross-cultural validation studies and implementation-evaluation studies in different countries are needed. MDPI 2022-10-01 /pmc/articles/PMC9600375/ /pubmed/36291444 http://dx.doi.org/10.3390/children9101508 Text en © 2022 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
ten Kate, Chantal A.
IJsselstijn, Hanneke
Dellenmark-Blom, Michaela
van Tuyll van Serooskerken, E. Sofie
Joosten, Maja
Wijnen, René M. H.
van Wijk, Michiel P.
Psychometric Performance of a Condition-Specific Quality-of-Life Instrument for Dutch Children Born with Esophageal Atresia
title Psychometric Performance of a Condition-Specific Quality-of-Life Instrument for Dutch Children Born with Esophageal Atresia
title_full Psychometric Performance of a Condition-Specific Quality-of-Life Instrument for Dutch Children Born with Esophageal Atresia
title_fullStr Psychometric Performance of a Condition-Specific Quality-of-Life Instrument for Dutch Children Born with Esophageal Atresia
title_full_unstemmed Psychometric Performance of a Condition-Specific Quality-of-Life Instrument for Dutch Children Born with Esophageal Atresia
title_short Psychometric Performance of a Condition-Specific Quality-of-Life Instrument for Dutch Children Born with Esophageal Atresia
title_sort psychometric performance of a condition-specific quality-of-life instrument for dutch children born with esophageal atresia
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9600375/
https://www.ncbi.nlm.nih.gov/pubmed/36291444
http://dx.doi.org/10.3390/children9101508
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