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儿童新诊断为幼年特发性关节炎的健康相关生活质量的决定因素。

Determinants of health-related quality of life in children newly diagnosed with juvenile idiopathic arthritis.

机构信息

Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.

出版信息

Arthritis Care Res (Hoboken). 2014 Feb;66(2):263-9. doi: 10.1002/acr.22117.

Abstract

OBJECTIVE

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.

METHODS

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.

RESULTS

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.

CONCLUSION

Nonmedical factors are associated with HRQOL in newly diagnosed patients with JIA after accounting for medical variables, particularly for psychosocial functioning.

摘要

目的

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。

方法

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)。

结果

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。

结论

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。

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