University of Manchester, Manchester, UK.
University of Manchester and Central Manchester University Hospitals NHS Foundation Trust, Manchester Academic Health Science Centre, Manchester, UK.
Arthritis Care Res (Hoboken). 2020 Apr;72(4):517-524. doi: 10.1002/acr.23877.
In pediatric research, investigators rely on proxy reports of outcome, such as the proxy-completed Childhood Health Assessment Questionnaire (C-HAQ), to assess function in juvenile idiopathic arthritis (JIA). As children mature, they may self-complete the adult HAQ or the unvalidated adolescent-specific C-HAQ. It is unclear how these measures compare and whether they are directly interchangeable. The present study was undertaken to compare agreement between the proxy-completed C-HAQ, adolescent-specific C-HAQ, and the HAQ at initial presentation to pediatric rheumatologic care and 1 year following the first presentation in adolescents with JIA.
Adolescents ages 11-17 years participating in the Childhood Arthritis Prospective Study (CAPS), a UK multicenter inception cohort, were included. In a CAPS substudy, adolescents self-completed the adolescent-specific C-HAQ and the HAQ, and proxies simultaneously completed the proxy-completed C-HAQ at baseline and 1 year. Correlation and agreement between scores were assessed at baseline. Agreement and ability to similarly classify clinically important changes over time were assessed at 1 year following initial presentation to rheumatologic care.
A total of 107 adolescents (adolescent-specific C-HAQ and HAQ) or their proxies (proxy-completed C-HAQ) had completed all 3 measures at baseline. Median age at diagnosis was 13 years, and 61% were female. Although the 3 scores demonstrated strong correlations (r > 0.8), they were not completely interchangeable, with agreement ranging between 70% and 80%. There was similar agreement between the changes in scores between baseline and 1 year. Using proxy-completed C-HAQ minimum clinically important cutoffs, the adolescent-specific C-HAQ and the HAQ similarly classified 80% to 90% of adolescents as having improved or worsened.
While there is relatively high agreement and similar classification of change between HAQ and the 2 C-HAQ scores, these are not completely interchangeable. This impacts the comparison of function when measured in different ways over the lifespan.
在儿科研究中，研究人员依赖于结局的代理报告，例如代理完成的儿童健康评估问卷（C-HAQ），以评估青少年特发性关节炎（JIA）的功能。随着儿童的成长，他们可能会自行完成成人 HAQ 或未经验证的青少年专用 C-HAQ。目前尚不清楚这些措施如何比较，以及它们是否可以直接互换。本研究旨在比较在 JIA 青少年首次就诊儿科风湿病护理时以及首次就诊 1 年后，代理完成的 C-HAQ、青少年专用 C-HAQ 和 HAQ 之间的一致性。
参与英国多中心发病队列儿童关节炎前瞻性研究（CAPS）的 11-17 岁青少年被纳入本研究。在 CAPS 的子研究中，青少年自行完成青少年专用 C-HAQ 和 HAQ，而代理人在基线和 1 年时同时完成代理完成的 C-HAQ。在基线时评估得分之间的相关性和一致性。在首次就诊风湿病护理 1 年后，评估一致性和随时间分类临床重要变化的能力。
共有 107 名青少年（青少年专用 C-HAQ 和 HAQ）或其代理人（代理完成的 C-HAQ）在基线时完成了所有 3 项测量。诊断时的中位年龄为 13 岁，61%为女性。尽管 3 个评分显示出很强的相关性（r > 0.8），但它们不完全可互换，一致性在 70%至 80%之间。基线和 1 年之间评分变化的一致性相似。使用代理完成的 C-HAQ 最小临床重要性截止值，青少年专用 C-HAQ 和 HAQ 同样将 80%至 90%的青少年分类为改善或恶化。
虽然 HAQ 和 2 个 C-HAQ 评分之间存在较高的一致性和相似的分类变化，但它们不完全可互换。这会影响在整个生命周期中以不同方式测量时的功能比较。
