University of Manitoba, Winnipeg, Manitoba, Canada.
British Columbia's Children's Hospital and University of British Columbia, Vancouver, British Columbia, Canada.
Arthritis Care Res (Hoboken). 2018 Jan;70(1):134-144. doi: 10.1002/acr.23236. Epub 2017 Dec 6.
To describe changes in health-related quality of life (HRQoL) over time in children with juvenile idiopathic arthritis (JIA), relative to other outcomes, and to identify predictors of unfavorable HRQoL trajectories.
Children with JIA in the Research in Arthritis in Canadian Children emphasizing Outcomes (ReACCh-Out) cohort were included. The Juvenile Arthritis Quality of Life Questionnaire (JAQQ, a standardized instrument), health-related Quality of My Life (HRQoML, an instrument based on personal valuations), and JIA core variables were completed serially. Analyses included median values, Kaplan-Meier survival curves, and latent trajectory analysis.
A total of 1,249 patients enrolled at a median of 0.5 months after diagnosis were followed for a median of 34.2 months. The degree of initial HRQoL impairment and probabilities of reaching the best possible HRQoL scores varied across JIA categories (best for oligoarthritis, worst for rheumatoid factor-positive polyarthritis). Median times to attain best possible HRQoL scores (JAQQ 59.3 months, HRQoML 34.5 months), lagged behind those for disease activity, pain, and disability measures. Most patients followed trajectories with minimal or mild impairment; however, 7.6% and 13.8% of patients, respectively, followed JAQQ and HRQoML trajectories with persistent major impairment in HRQoL. JIA category, aboriginal ethnicity, and baseline disease activity measures distinguished between membership in trajectories with major and minimal impairments.
Improvement in HRQoL is slower than for disease activity, pain, and disability. Improvement of a measure based on respondents' preferences (HRQoML) is more rapid than that of a standardized measure (JAQQ). Higher disease activity at diagnosis heralds an unfavorable HRQoL trajectory.
描述幼年特发性关节炎（JIA）患儿健康相关生活质量（HRQoL）随时间的变化，与其他结局相比，并确定不良 HRQoL 轨迹的预测因素。
纳入加拿大关节炎儿童研究中强调结局（ReACCh-Out）队列中的 JIA 患儿。连续完成青少年关节炎生活质量问卷（JAQQ，一种标准化工具）、健康相关生活质量（HRQoML，一种基于个人价值观的工具）和 JIA 核心变量。分析包括中位数、Kaplan-Meier 生存曲线和潜在轨迹分析。
共有 1249 例患者在诊断中位数为 0.5 个月后入组，中位随访时间为 34.2 个月。初始 HRQoL 受损程度和达到最佳 HRQoL 评分的概率在 JIA 类别中有所不同（寡关节炎最佳，类风湿因子阳性多关节炎最差）。达到最佳 HRQoL 评分的中位数时间（JAQQ 为 59.3 个月，HRQoML 为 34.5 个月）滞后于疾病活动度、疼痛和残疾测量的时间。大多数患者遵循轻度或轻度受损的轨迹；然而，分别有 7.6%和 13.8%的患者遵循 JAQQ 和 HRQoML 轨迹，HRQoL 持续存在严重受损。JIA 类别、土著民族和基线疾病活动度测量可区分主要和最小受损轨迹的成员。
HRQoL 的改善比疾病活动度、疼痛和残疾的改善缓慢。基于受访者偏好的测量（HRQoML）的改善比标准化测量（JAQQ）的改善更快。诊断时更高的疾病活动度预示着不良的 HRQoL 轨迹。
