Development of a Simplified Arabic Questionnaire of Health-Related Quality of Life for Children With Cystic Fibrosis.

IF 2.3 3区 医学 Q1 PEDIATRICS
Heba A Ali, Neven S Baiome, Yasmin A Salem
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引用次数: 0

Abstract

Background: The measurement of the quality of life (QoL) of cystic fibrosis (CF) children in the Arabic world is of substantial importance. However, the relative lack of disease-specific Arabic QoL questionnaires may represent a major challenge.

Objectives: To develop a simple questionnaire that could be used for assessing and monitoring the level of QoL in CF children, particularly in Arabic-speaking populations.

Patients and methods: This was a cross-sectional study involving 50 children and adolescent patients with CF and their caregivers who completed 2 self-administered questionnaires on health-related quality of life (HRQOL); the Arabic simplified CF Questionnaire-Child version for children aged more than 8 years, and the Parent version for children aged from 2 to 8 years. The psychometric properties of the questionnaires were evaluated. Children's data and clinical severity scoring were also collected.

Results: The CF QoL questionnaires (child and parent versions) exhibited good internal consistency and reliability, with Cronbach's α values being (α = 0.91, 0.871). Item-item and item-total correlation analyses showed adequate construct validity (0.31-0.86) and (0.277-0.682). Furthermore, patients aged 2-8 years scored significantly better than those aged more than 8 years for the total HRQOL score (p < 0.001).

Conclusions: The simplified CF QoL questionnaires are reliable and valid measures of HRQOL for CF children, especially in Arabic-speaking populations. The younger children with CF showed satisfactory health-related QoL levels compared to the older ones. These findings support the important role of a careful psychological assessment of CF children as a part of monitoring the disease progression.

囊性纤维化儿童健康相关生活质量简易阿拉伯语问卷的编制
背景:测量阿拉伯世界囊性纤维化(CF)儿童的生活质量(QoL)具有重要意义。然而,相对缺乏针对特定疾病的阿拉伯语生活质量问卷可能是一个重大挑战。目的:开发一种简单的问卷,用于评估和监测CF儿童的生活质量水平,特别是在阿拉伯语人群中。患者和方法:这是一项横断面研究,涉及50名患有CF的儿童和青少年患者及其护理人员,他们完成了2份健康相关生活质量(HRQOL)自我管理的问卷;8岁以上儿童使用阿拉伯语简化CF问卷-儿童版,2 - 8岁儿童使用家长版。对问卷的心理测量特性进行了评估。还收集了儿童数据和临床严重程度评分。结果:CF生活质量问卷(儿童版和家长版)具有良好的内部一致性和信度,Cronbach’s α值为(α = 0.91, 0.871)。项目-项目和项目-总相关分析显示有足够的结构效度(0.31-0.86)和(0.277-0.682)。此外,2-8岁患者的HRQOL总评分明显优于8岁以上患者(p)。结论:简化的CF生活质量问卷是CF儿童HRQOL的可靠和有效的测量方法,特别是在阿拉伯语人群中。年龄较小的CF患儿与年龄较大的CF患儿相比,健康相关的生活质量水平令人满意。这些发现支持对CF儿童进行仔细的心理评估作为监测疾病进展的一部分的重要作用。
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来源期刊
Pediatric Pulmonology
Pediatric Pulmonology 医学-呼吸系统
CiteScore
6.00
自引率
12.90%
发文量
468
审稿时长
3-8 weeks
期刊介绍: Pediatric Pulmonology (PPUL) is the foremost global journal studying the respiratory system in disease and in health as it develops from intrauterine life though adolescence to adulthood. Combining explicit and informative analysis of clinical as well as basic scientific research, PPUL provides a look at the many facets of respiratory system disorders in infants and children, ranging from pathological anatomy, developmental issues, and pathophysiology to infectious disease, asthma, cystic fibrosis, and airborne toxins. Focused attention is given to the reporting of diagnostic and therapeutic methods for neonates, preschool children, and adolescents, the enduring effects of childhood respiratory diseases, and newly described infectious diseases. PPUL concentrates on subject matters of crucial interest to specialists preparing for the Pediatric Subspecialty Examinations in the United States and other countries. With its attentive coverage and extensive clinical data, this journal is a principle source for pediatricians in practice and in training and a must have for all pediatric pulmonologists.
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