Gebresillassie Begashaw Melaku, Belay Yared Belete, Netere Adeladlew Kassie, Gu Ning Yan
School of Medicine and Public Health, University of Newcastle, Newcastle, Australia.
School of Pharmacy, University of Gondar, Gondar, Ethiopia.
J Patient Rep Outcomes. 2025 Aug 13;9(1):100. doi: 10.1186/s41687-025-00928-8.
BACKGROUND: Limited evidence exists regarding the measurement properties of the EQ-5D-Y-3L across different modes of administration. This study aimed to examine changes in parent/caregiver-child/adolescent dyad agreement concerning health-related quality of life (HRQoL) over time, assess variations in health status according to socio-demographic factors, and evaluate the responsiveness of the EQ-5D-Y-3L within a pediatric population in Ethiopia. METHODS: The study was conducted at the University of Gondar Comprehensive Specialized Hospital, involving children/adolescents aged 4-18 years admitted to the pediatric inpatient unit. Children/adolescents completed the EQ-5D-Y-3L self-complete version at admission and discharge, while parents/caregivers completed the proxy version. Health status was analyzed utilizing the EQ-5D-Y-3L descriptive profiles, utility values, and the EuroQol Visual Analogue Scale (EQ VAS) scores, categorized by age, gender, and residence. Agreement between parent/caregiver and child/adolescent reports was evaluated using weighted Cohen's kappa for dimension levels and the intraclass correlation coefficient (ICC) for utility and EQ VAS scores. Responsiveness was assessed through paired t-tests and the Paretian Classification of Health Change (PCHC) analysis, which classifies health status changes as improved, worsened, mixed, or unchanged based on changes across EQ-5D dimensions. RESULTS: A total of 957 children/adolescents, with a mean age of 10.7 ± 4.3 years, along with their parents/caregivers, participated in the study. The predominant diagnoses included pneumonia, meningitis, malaria, malnutrition, and glomerulonephritis. Both child/adolescent and parent/caregiver reports indicated poorer health status among older adolescents (13-18 years), boys from rural areas. Agreement on the EQ-5D-Y-3L dimension levels was fair to moderate at admission (weighted kappa ranging from 0.28 to 0.38) and was poorer at discharge for the 'worried, sad or unhappy' dimension (weighted kappa of 0.15). Agreement on utility and EQ VAS scores was acceptable at both admission and discharge (ICC: 0.498-0.676), with moderate to good agreement observed among children/adolescents aged 7-16 years. However, agreement on utility scores decreased at discharge for older boys (13-18 years old) and urban residents, while it increased for the younger age group (4-6 years old). Responsiveness analysis demonstrated significant improvements in the dimensions of 'Looking After Myself,' 'Mobility,' and 'Worried, Sad or Unhappy,' with most children/adolescents exhibiting health improvements according to PCHC criteria. CONCLUSION: Parent/caregiver-child/adolescent dyad agreement concerning HRQoL was low to moderate and varied according to socio-demographic factors. The EQ-5D-Y-3L instrument demonstrated responsiveness to changes in health status, supporting its utility in pediatric populations. These findings underscore the importance of employing age-appropriate and context-sensitive HRQoL assessment tools in pediatric care and health policy. Incorporating both child/adolescent and parent/caregiver perspectives can inform clinical decisions and resource allocation, especially in low-resource settings. Further research is warranted to explore factors influencing these variations and to enhance understanding of their underlying causes.
背景:关于EQ-5D-Y-3L在不同施测方式下的测量属性,现有证据有限。本研究旨在考察父母/照料者与儿童/青少年在健康相关生活质量(HRQoL)方面的一致性随时间的变化,根据社会人口学因素评估健康状况的差异,并评估EQ-5D-Y-3L在埃塞俄比亚儿科人群中的反应度。 方法:本研究在贡德尔大学综合专科医院进行,纳入儿科住院部收治的4至18岁儿童/青少年。儿童/青少年在入院和出院时完成EQ-5D-Y-3L自填版问卷,而父母/照料者完成代理版问卷。利用EQ-5D-Y-3L描述性简表、效用值和欧洲五维度健康量表(EQ VAS)得分分析健康状况,并按年龄、性别和居住地进行分类。使用加权科恩kappa系数评估父母/照料者与儿童/青少年报告在维度水平上的一致性,使用组内相关系数(ICC)评估效用值和EQ VAS得分的一致性。通过配对t检验和健康变化的帕累托分类(PCHC)分析评估反应度,PCHC分析根据EQ-5D各维度的变化将健康状况变化分为改善、恶化、混合或无变化。 结果:共有957名儿童/青少年及其父母/照料者参与了本研究,儿童/青少年的平均年龄为10.7±4.3岁。主要诊断包括肺炎、脑膜炎、疟疾、营养不良和肾小球肾炎。儿童/青少年和父母/照料者的报告均显示,年龄较大的青少年(13至18岁)、农村地区的男孩健康状况较差。在入院时,父母/照料者与儿童/青少年在EQ-5D-Y-3L维度水平上的一致性为中等偏低(加权kappa系数范围为0.28至0.38),而在出院时,“焦虑、悲伤或不开心”维度的一致性较差(加权kappa系数为0.15)。在入院和出院时,效用值和EQ VAS得分的一致性均可接受(ICC:0.498至0.676),在7至16岁的儿童/青少年中观察到中等至良好的一致性。然而,对于年龄较大的男孩(13至18岁)和城市居民,出院时效用值得分的一致性下降,而对于较年轻的年龄组(4至6岁)则有所增加。反应度分析表明,“自我照顾”“活动能力”和“焦虑、悲伤或不开心”维度有显著改善,根据PCHC标准,大多数儿童/青少年的健康状况有所改善。 结论:父母/照料者与儿童/青少年在HRQoL方面的一致性为低到中等,并因社会人口学因素而异。EQ-5D-Y-3L工具显示出对健康状况变化的反应度,支持其在儿科人群中的应用。这些发现强调了在儿科护理和健康政策中使用适合年龄和情境的HRQoL评估工具的重要性。纳入儿童/青少年和父母/照料者双方的观点可以为临床决策和资源分配提供信息,特别是在资源匮乏的环境中。有必要进一步研究以探索影响这些差异的因素,并加深对其潜在原因的理解。
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