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贲门失弛缓症患儿疾病特异性生活质量量表的开发与验证

Development and validation of a disease-specific quality-of-life measure for children with achalasia.

作者信息

Marlais M, Fishman J R, Rawat D J, Haddad M

机构信息

Chelsea and Westminster Hospital, Department of Paediatric Gastroenterology, London, United Kingdom.

出版信息

Eur J Pediatr Surg. 2010 Mar;20(2):92-4. doi: 10.1055/s-0029-1243622. Epub 2010 Jan 22.

DOI:10.1055/s-0029-1243622
PMID:20099221
Abstract

BACKGROUND

Achalasia is an uncommon oesophageal motility disorder occasionally affecting children. Children with achalasia can experience significant morbidity, and quality-of- life (QoL) has never been studied in this population.

AIM

The aim was to develop a disease-specific quality-of-life (DS-QoL) measure for children with achalasia.

METHODS

Item response theory methods were used to develop the DS-QoL measure. The construct validity of this measure was assessed by comparing items and domains with the generic PedsQL questionnaire. Reliability was assessed using Cronbach's alpha coefficient for internal consistency.

RESULTS

17 children completed the final DS-QoL measure, which consisted of 20 items in three domains. The completion rate for items was 99%. "Floor and ceiling effects" ranged from 0-19%. Construct validity was good with significant correlation between 2 domains and 2 items on the PedsQL. Reliability was excellent, with Cronbach's alpha coefficient ranging from 0.78-0.93.

CONCLUSIONS

This DS-QoL measure is appropriate for use in children with achalasia and has shown good results in this validation study. Further work in higher numbers is necessary to determine discriminant validity and test-retest reliability.

摘要

背景

贲门失弛缓症是一种罕见的食管动力障碍性疾病,偶尔会影响儿童。患有贲门失弛缓症的儿童可能会出现严重的发病情况,且该人群的生活质量(QoL)从未被研究过。

目的

旨在为患有贲门失弛缓症的儿童开发一种疾病特异性生活质量(DS-QoL)测量方法。

方法

采用项目反应理论方法来开发DS-QoL测量方法。通过将项目和领域与通用的儿童生活质量量表(PedsQL)进行比较,评估该测量方法的结构效度。使用克朗巴哈α系数评估内部一致性来评估信度。

结果

17名儿童完成了最终的DS-QoL测量,该测量方法由三个领域的20个项目组成。项目完成率为99%。“地板效应”和“天花板效应”范围为0 - 19%。结构效度良好,PedsQL上的2个领域和2个项目之间存在显著相关性。信度极佳,克朗巴哈α系数范围为0.78 - 0.93。

结论

这种DS-QoL测量方法适用于患有贲门失弛缓症的儿童,并且在这项验证研究中显示出了良好的结果。需要开展更多研究以确定区分效度和重测信度。

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