Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
Arthritis Care Res (Hoboken). 2014 Feb;66(2):263-9. doi: 10.1002/acr.22117.
To examine the degree to which nonmedical factors explain additional variance in parent proxy report and child self-report of health-related quality of life (HRQOL) among newly diagnosed children with juvenile idiopathic arthritis (JIA) after accounting for medical factors.
Parents (of children ages 2-16 years; n = 230) and patients (ages >5 years; n = 180) diagnosed within the previous 6 months completed surveys to assess medical (clinical parameters and functional status) and nonmedical (self-efficacy, coping, barriers to adherence, social support, parental distress, and access to care) factors and HRQOL (Pediatric Quality of Life Inventory Generic Core Scales). Physician-rated global assessment of disease activity, active joint count, and select laboratory variables (rheumatoid factor, antinuclear antibodies, and erythrocyte sedimentation rate) were recorded.
Nonmedical factors, including self-efficacy, coping with pain, barriers to adherence, social support, and parental distress, explained additional variance in HRQOL total, physical functioning, and psychosocial functioning scales (R(2) increases of 6%, 1%, and 13% for parent proxy report and 16%, 7%, and 30% for self-report, respectively). Parental distress was uniquely associated with parent proxy-report HRQOL, while child self-efficacy and social support were uniquely associated with self-report HRQOL.
Nonmedical factors are associated with HRQOL in newly diagnosed patients with JIA after accounting for medical variables, particularly for psychosocial functioning.
在考虑医疗因素后,研究非医疗因素在新诊断为幼年特发性关节炎 (JIA) 的儿童的父母代报告和儿童自报健康相关生活质量 (HRQOL) 中所占的程度。
父母(年龄在 2-16 岁之间;n=230)和患者(年龄>5 岁;n=180)在过去 6 个月内完成了调查,以评估医疗(临床参数和功能状态)和非医疗(自我效能、应对、遵医障碍、社会支持、父母痛苦和获得医疗)因素以及 HRQOL(儿童生活质量通用核心量表)。记录了医生评估的疾病活动总体评估、活跃关节计数和选择的实验室变量(类风湿因子、抗核抗体和红细胞沉降率)。
非医疗因素,包括自我效能、应对疼痛、遵医障碍、社会支持和父母痛苦,解释了 HRQOL 总分、身体功能和心理社会功能量表的额外差异(父母代报告的 R²增加了 6%、1%和 13%,而自我报告的 R²增加了 16%、7%和 30%)。父母痛苦与父母代报告的 HRQOL 有独特的相关性,而儿童自我效能和社会支持与自我报告的 HRQOL 有独特的相关性。
在考虑医疗变量后,非医疗因素与新诊断为 JIA 的患者的 HRQOL 相关,特别是与心理社会功能相关。