Determinants of Health Related Quality of Life in Children with JIA

幼年特发性关节炎儿童健康相关生活质量的决定因素

基本信息

批准号：
8382404
负责人：
MICHAEL SEID
金额：
$ 25.84万
依托单位：
CINCINNATI CHILDRENS HOSP MED CTR
依托单位国家：
美国
项目类别：
财政年份：
2012
资助国家：
美国
起止时间：
2012-08-01 至 2015-07-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/8382404
关键词：
ARHGEF5 gene Adherence Affect Age American Area Arthralgia Arthritis Autoimmune Diseases Biological Biology Bone Diseases Characteristics Child Childhood Chronic Childhood Arthritis Chronically Ill Climate Clinical Clinical Research Clinical Trials Cohort Studies Data Databases Disease Disease Outcome Distal Distress Ensure Environment Ethnic Origin Family Gender Goals Health Health Services Accessibility Healthcare Systems Individual Intervention Joints Knowledge Lead Literature Measurement Mediating Medical Methodology Muscle Musculoskeletal Outcome Outcomes Research Pathway interactions Patients Perception Pharmaceutical Preparations Pharmacotherapy Physical Function Physiological Population Principal Investigator Prospective Studies Public Health Quality of life Race Recruitment Activity Research Research Infrastructure Research Personnel Resources Rheumatology Role Scientist Self Efficacy Skin Social support Socioeconomic Status Surveys Testing Therapeutic Intervention Time Work active method aged base body system clinical care clinical effect coping disorder control experience functional status health related quality of life improved innovation multidisciplinary novel strategies programs prospective psychosocial therapeutic target trend

项目摘要

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.

改善健康相关的生活质量 (HRQOL) 是青少年特发性儿童的关键治疗目标关节炎 (JIA)，但我们对于医学和非医学变量如何决定的知识存在差距持续治疗背景下的 HRQOL。我们的长期目标是改善幼年特发性关节炎儿童的 HRQOL。该研究的具体目标是确定医学变量（生物、生理、临床、身体机能）和非医学变量（个人、家庭、环境）特征）预测正在积极治疗 JIA 的儿童的 HRQOL。我们的中心假设是，对于对于接受治疗的幼年特发性关节炎儿童，HRQOL 部分取决于生物、生理、临床、和功能变量，个人、家庭和环境变量既有直接变量又有功能变量。对 HRQOL 的间接影响。我们将招募 5 至 16 岁的新 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）预测的途径接受幼年特发性关节炎治疗的儿童的 HRQOL； #2) 确定非医学特征的程度除医疗因素外，儿童、家庭和环境也解释了 HRQOL 中的额外差异正在接受幼年特发性关节炎治疗的儿童。拟议研究的理由是成功完成这项研究该项目将有助于全面了解患者之间 HRQOL 差异的驱动因素结果并确定其他治疗靶点，从而使临床医生能够最大限度地 JIA 儿童的 HRQOL，并最大限度地提高 JIA 治疗对 HRQOL 的影响。拟议的研究其创新之处在于它代表了一种理解 HRQOL 的决定因素和临床干预对 HRQOL 的潜在影响。预计该研究将产生以下成果预期成果”。首先，我们将更好地了解儿童 HRQOL 的决定因素 JIA 在治疗范围内。其次，我们将确定具体的、可修改的因素旨在改善 HRQOL 并改善 JIA 治疗对 HRQOL 的影响。第三，我们将有开发了一个丰富的数据库来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。与公共卫生的相关性：改善 HRQOL 是美国医疗保健的基本目标系统，但对于由于以下因素而导致的医疗变量变化的方式知之甚少：治疗与非医学变量相互作用，导致 HRQOL 发生变化。我们的目标和具体目标与 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。这项研究代表了向确保最佳 HRQOL 迈出的一步患有幼年特发性关节炎的儿童和其他慢性病儿童。