患者声音：青少年特发性关节炎患者身体健康和残疾的横断面研究。

The patient's voice: a cross-sectional study of physical health and disability in juvenile idiopathic arthritis.

机构信息

Department of Clinical and Molecular Medicine, Faculty of Medicine and Health Sciences (IKOM), Norwegian University of Science and Technology (NTNU), Trondheim, Norway.

Department of Pediatrics, St. Olavs Hospital, Trondheim University Hospital, Trondheim, Norway.

出版信息

Pediatr Rheumatol Online J. 2024 Nov 18;22(1):100. doi: 10.1186/s12969-024-01034-7.

DOI:10.1186/s12969-024-01034-7

PMID:39558411

原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11572323/

Abstract

BACKGROUND

With increasing focus on patient-reported outcome measures (PROMs) in chronic rheumatic diseases, we aimed to evaluate the self-reported physical and psychosocial health in children with juvenile idiopathic arthritis (JIA) compared to matched population-based controls. Furthermore, we aimed to study the association of patient- and physician-reported outcome measures in JIA with patient-reported physical disability.

METHODS

We used data from a Norwegian JIA cohort study (NorJIA), including clinical characteristics and outcome measures in participants with JIA and sex- and age-matched population-based controls. Self-reported physical and psychosocial health were assessed using the generic Child Health Questionnaire (CHQ). Comparisons between children with JIA and controls were performed by test of proportions for categorical variables and t-test for continuous variables. To evaluate the association of patient- and physician-reported outcome measures with patient-reported physical disability, assessed with the Child Health Assessment Questionnaire (CHAQ) in children with JIA, we used logistic regression to estimate adjusted odds ratio (OR) with 95% confidence interval (CI).

RESULTS

In total, 221 participants with JIA (59.3% females, median age 12.7 years) and 207 controls with available data were included. In the JIA group, 24.3% scored below the norm for physical health (CHQ PhS < 40) and 8.7% scored below the norm for psychosocial health (CHQ PsS < 40). The corresponding numbers for the control group were 0.5% and 1.9%, respectively. In the JIA group, 57.9% reported physical disability (CHAQ > 0). Several patient-reported outcome measures, such as poor physical health (CHQ PhS < 40), disease-related pain, and the patient's global assessment of disease impact on wellbeing, were strongly associated with self-reported physical disability (CHAQ > 0), adjusted OR 19.0 (95% CI 5.6, 64.1), 14.1 (95% CI 6.8, 29.2), and 14.0 (95% CI 6.2, 31.6), respectively. Associations were also found for active disease according to Wallace (adjusted OR 36.3, 95% CI 10.3, 128.1), and physician-reported global assessment of disease activity (adjusted OR 6.2, 95% CI 3.1, 12.6).

CONCLUSIONS

The strong association between patient- and physician-reported outcome measures and patient-reported physical disability strengthens the importance of including the patient's voice in a comprehensive evaluation of patient outcome in JIA.

TRIAL REGISTRATION

ClinicalTrials.gov (No: NCT03904459).

摘要

背景

随着人们越来越关注慢性风湿性疾病的患者报告结局测量（PROMs），我们旨在评估青少年特发性关节炎（JIA）患儿与匹配的基于人群的对照组相比，自我报告的身体和心理社会健康状况。此外，我们旨在研究 JIA 中患者和医生报告的结局测量与患者报告的身体残疾之间的关联。

方法

我们使用了挪威 JIA 队列研究（NorJIA）的数据，该研究包括 JIA 患者和性别及年龄匹配的基于人群的对照组参与者的临床特征和结局测量。使用通用儿童健康问卷（CHQ）评估自我报告的身体和心理社会健康状况。使用比例检验比较分类变量和 t 检验比较连续变量，以比较 JIA 患儿和对照组之间的差异。为了评估患者和医生报告的结局测量与 JIA 患儿自我报告的身体残疾（使用儿童健康评估问卷（CHAQ）评估）之间的关联，我们使用逻辑回归来估计调整后的优势比（OR）及其 95%置信区间（CI）。

结果

共有 221 名 JIA 患儿（59.3%为女性，中位年龄 12.7 岁）和 207 名有可用数据的对照组纳入研究。在 JIA 组中，24.3%的患儿身体健康评分低于正常值（CHQ PhS<40），8.7%的患儿心理社会健康评分低于正常值（CHQ PsS<40）。对照组相应的数字分别为 0.5%和 1.9%。在 JIA 组中，57.9%的患儿报告存在身体残疾（CHAQ>0）。一些患者报告的结局测量，如身体健康状况不佳（CHQ PhS<40）、与疾病相关的疼痛以及患者对疾病对幸福感影响的整体评估，与自我报告的身体残疾（CHAQ>0）密切相关，调整后的优势比（OR）分别为 19.0（95%CI 5.6，64.1）、14.1（95%CI 6.8，29.2）和 14.0（95%CI 6.2，31.6）。根据 Wallace 的标准，疾病活动也与身体残疾相关（调整后的 OR 36.3，95%CI 10.3，128.1），以及医生报告的疾病活动整体评估（调整后的 OR 6.2，95%CI 3.1，12.6）。