Determinants of Health Related Quality of Life in Children with JIA

改善健康相关生活质量(HRQOL)是青少年特发性疾病儿童的主要治疗目标 关节炎(JIA)，但我们对医学和非医学变量如何决定存在差距 正在进行的治疗背景下的HRQOL。我们的长期目标是改善JIA儿童的HRQOL。 这项研究的具体目标是确定医学变量(生物学、 生理、临床、身体功能)和非医学变量(个人、家庭、环境 特征)预测积极接受JIA治疗的儿童的HRQOL。我们的中心假设是，对于 正在接受治疗的JIA儿童的HRQOL部分地由生物、生理、临床、 和函数变量，以及个人、家庭和环境变量都有直接和 对HRQOL的间接影响。我们将招募新的5至16岁的JIA患者(n=224)，并进行 为期一年的前瞻性纵向队列研究，以实现以下具体目标：#1)确定 医学变量(生物、生理、临床、身体功能)预测的途径 接受JIA治疗的儿童的HRQOL；#2)确定非医学特征在多大程度上 儿童、家庭和环境解释了除医学因素以外的额外差异。 患有JIA的儿童正在接受治疗。拟议研究的理由是成功地完成了这项研究 该项目将导致对患者之间HRQOL差异的驱动因素的彻底了解 结果和其他治疗靶点的确定，从而使临床医生能够最大限度地 目的：提高JIA患儿的HRQOL，最大限度地发挥JIA治疗对HRQOL的影响。建议进行的研究 创新性在于它代表了一种新的方法来理解HRQOL的决定因素和 临床干预对高危人群生活质量的潜在影响预计这项研究将产生以下成果 预期结果‘。首先，我们将更好地了解高血压儿童的HRQOL决定因素 在贾某治疗的背景下。其次，我们将确定特定的、可修改的因素， 目的：改善HRQOL，提高JIA治疗对HRQOL的影响。第三，我们将拥有 开发了一个丰富的数据库，以揭示这些关系随着时间的推移的趋势，并确定进一步的领域 学习。与公共健康相关：改善HRQOL是美国医疗保健的根本目标 系统，但人们对医疗变量的变化方式知之甚少 治疗与非医学变量相互作用，从而导致HRQOL的变化。我们的目标和具体 AIMS的目标与NIAMS改善受疾病影响的美国人的HRQOL的长期计划一致 骨骼、肌肉、关节和皮肤。这项研究代表着朝着确保以下方面的最佳HRQOL迈出了一步 对于患有JIA的儿童和其他慢性病儿童。

Improving health-related quality of life (HRQOL) is a key treatment goal for children with Juvenile Idiopathic Arthritis (JIA), but there is a gap in our knowledge of how medical and non-medical variables determine HRQOL in the context of ongoing treatment. Our long-term goal is to improve HRQOL for children with JIA. The specific objective of the study is to determine the pathways by which medical variables (biological, physiological, clinical, physical function) and non-medical variables (individual, family, environmental characteristics) predict HRQOL in children being actively treated for JIA. Our central hypothesis is that, for children with JIA undergoing treatment, HRQOL is determined, in part, by biological, physiological, clinical, and functional variables and that individual, family, and environmental variables have both direct and indirect effects on HRQOL. We will recruit new JIA patients aged 5 to 16 years (n = 224) and perform a one-year prospective longitudinal cohort study to accomplish the following specific aims: #1) Determine the pathways by which medical variables (biological, physiological, clinical, physical function) predict HRQOL in children being treated for JIA; #2) Determine the extent to which non-medical characteristics of the child, family, and environment explain additional variance, beyond medical factors, in HRQOL in children being treated for JIA. The rationale for the proposed research is that successful completion of this project will lead to a thorough understanding of the drivers of between-patient differences in HRQOL outcomes and to identification of additional therapeutic targets, thus enabling clinicians to maximize HRQOL for children with JIA and to maximize the effect of JIA treatments on HRQOL. The proposed study is innovative in that it represents a novel approach to understanding the determinants of HRQOL and the potential effects of clinical interventions on HRQOL. It is anticipated that the study will yield the following expected outcomes'. First, we will have a better understanding of determinants of HRQOL in children with JIA within the context of treatment. Second, we will have identified specific, modifiable factors that could be targeted to improve HRQOL and to improve the effect of JIA treatments on HRQOL. Third, we will have developed a rich database to reveal trends in these relationships over time and identify further areas for study. Relevance to public health: Improving HRQOL is a fundamental goal of the US health care system, yet too little is known about the ways in which changes in medical variables as a result of treatment interact with non-medical variables to produce changes in HRQOL. Our objective and specific aims are consistent with NIAMS's long-range plan to improve HRQOL for Americans affected by diseases of bones, muscles, joints, and skin. This research represents a step towards ensuring optimal HRQOL for children with JIA and for other chronically ill children.