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
Department of Pediatric Surgery and Intensive Care Children, Erasmus University Medical Centre-Sophia Children's Hospital, 3015 CN Rotterdam, The Netherlands.
Department of Pediatric Surgery, Queen Silvia Children's Hospital, Sahlgrenska University Hospital, 41650 Gothenburg, Sweden.
Children (Basel). 2022 Oct 1;9(10):1508. doi: 10.3390/children9101508.
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.
瑞典和德国研发了一种用于评估食管闭锁（EA）患儿生活质量的特定疾病测评工具（EA-QOL©）。在荷兰应用该工具之前，我们评估了其在荷兰儿童中的心理测量学性能。经过瑞典语到荷兰语的翻译后，对一部分EA患者及其父母进行了认知反馈。接下来，在全国范围内的实地测试中评估了可行性、可靠性和有效性。认知反馈确认了预定义概念，尽管有些问题并不普遍适用。可行性较差到中等。在2至7岁的儿童中，17个条目中有8个缺失值>5%。在8至17岁的儿童中，代理报告中有3个条目、自我报告中有5个条目存在此情况。内部可靠性良好。重测信度显示出良好的相关性。自我报告与代理报告之间的比较信度很强。结构效度具有区分性。2至7岁代理报告的收敛效度很强，8至17岁代理报告和自我报告的收敛效度较弱到中等。总之，荷兰语翻译的EA-QOL问卷显示出良好的可靠性和有效性。可行性可能受到被认为不适用于个别儿童情况的条目的影响。计算机自适应测试可能是使问卷针对个体患者进行定制的一个潜在解决方案。此外，还需要在不同国家进行跨文化验证研究和实施评估研究。
