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: 7475986
• 负责人: MICHAEL SEID
• 金额: $ 23.54万
• 依托单位: CINCINNATI CHILDRENS HOSP MED CTR
• 依托单位国家: 美国
• 财政年份: 2008
• 资助国家: 美国
• 起止时间: 2008-04-01 至 2013-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7475986
• 关键词: ARHGEF5 gene; Adherence; Affect; Age; American; Area; Arthralgia; Arthritis; Autoimmune Diseases; Biological; Biology; Bone Diseases; Caring; Characteristics; Child; Childhood; Chronic Childhood Arthritis; Chronically Ill; Climate; Clinical; Clinical Research; Clinical Trials; Cohort Studies; Count; Data; Databases; Disease; Disease Outcome; Distal; Distress; Ensure; Environment; Ethnic Origin; Family; Gender; Glass; 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; Personal Satisfaction; Pharmaceutical Preparations; Pharmacotherapy; Physical Function; Physiological; Population; Principal Investigator; Prospective Studies; Public Health; Quality of life; Race; Range; Recruitment Activity; Research; Research Infrastructure; Research Personnel; Resources; Rheumatology; Role; Scientist; Self Efficacy; Skin; Social support; Socioeconomic Status; Surveys; Testing; Therapeutic Intervention; Time; Work; base; body system; clinical effect; coping; disorder control; experience; functional status; health related quality of life; improved; innovation; 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.

改善健康相关的生活质量（HRQOL）是青少年特发性脑脊髓炎儿童的一个关键治疗目标。 关节炎（JIA），但我们对医学和非医学变量如何决定 在持续治疗背景下的HRQOL。我们的长期目标是改善JIA儿童的HRQOL。 该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JIA积极治疗儿童的HRQOL。我们的核心假设是， 在接受治疗的JIA儿童中，HRQOL部分由生物学、生理学、临床 和功能变量，个人，家庭和环境变量既有直接的， 对HRQOL的间接影响我们将招募5至16岁的新JIA患者（n = 224）， 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（生物学、生理学、临床、身体功能）预测的途径 正在接受JIA治疗的儿童的HRQOL; #2）确定JIA的非医学特征 儿童、家庭和环境解释了HRQOL在医疗因素之外的额外差异， 孩子们正在接受JIA治疗。拟议研究的理由是，成功完成这项研究， 该项目将导致对HRQOL患者间差异的驱动因素的全面理解 结果和识别其他治疗靶点，从而使临床医生能够最大限度地 HRQOL的JIA儿童，并最大限度地提高JIA治疗对HRQOL的影响。拟定研究 是创新的，因为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HRQOL的潜在影响。预计这项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， 在治疗的背景下JIA。第二，我们将确定具体的、可修改的因素， 有针对性地改善HRQOL和改善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，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， study.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，但太少的是知道如何在医疗变量的变化，作为一个结果， 治疗与非医学变量相互作用，产生HRQOL的变化。我们的目标和具体 目标与NIAMS的长期计划一致，以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， 儿童JIA和其他慢性病儿童。