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

• 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
• 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

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.

改善与健康相关的生活质量（HRQOL）是少年特发性儿童的关键治疗目标 关节炎（JIA），但是我们对医学和非医学变量如何确定的知识存在差距 HRQOL在持续治疗的背景下。我们的长期目标是改善JIA儿童的HRQOL。 该研究的具体目的是确定医疗变量（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）预测儿童的HRQOL被积极治疗JIA。我们的中心假设是，因为 JIA接受治疗的儿童，HRQOL的一部分是由生物学，生理，临床，临床确定的 和功能变量以及个人，家庭和环境变量既有直接，又有 间接对HRQOL的影响。我们将招募5至16岁（n = 224）的新JIA患者，并执行 一年的前瞻性纵向队列研究以实现以下特定目的：＃1）确定 医学变量（生物学，生理，临床，身体机能）预测的途径 HRQOL在儿童中接受Jia的治疗； ＃2）确定非医学特征的程度 儿童，家庭和环境解释了HRQOL的其他差异，除了医学因素之外 儿童接受贾的治疗。拟议研究的理由是成功完成 项目将导致对HRQOL患者间差异的驱动因素的透彻理解 结果并确定其他治疗靶标，从而使临床医生能够最大化 HRQOL针对JIA儿童，并最大程度地提高JIA治疗对HRQOL的影响。拟议的研究 具有创新性，因为它代表了一种新颖的方法来理解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 预期的结果。首先，我们将对患有HRQOL的决定因素有更好的了解 JIA在治疗的背景下。其次，我们将确定可能是特定的，可修改的因素 旨在改善HRQOL并改善JIA处理对HRQOL的影响。第三，我们将 开发了一个丰富的数据库，以揭示这些关系的趋势，并确定进一步的领域 学习。与公共卫生有关：改善HRQOL是美国医疗保健的基本目标 系统，对于由于 治疗与非医学变量相互作用，以产生HRQOL的变化。我们的目标和具体 目标与Niams的远程计划一致，该计划是改善受疾病影响的美国人的HRQOL 骨骼，肌肉，关节和皮肤。这项研究代表了确保最佳HRQOL的一步 贾和其他长期病的孩子的孩子。