Burden, correlates, and outcomes of poor cognitive and physical functioning in the lupus population

项目总结 美国人口中越来越多的老年人可能发展为晚发型系统性红斑狼疮 红斑狼疮(SLE)和年轻SLE患者更长的预期寿命可能会导致戏剧性的 未来20年，老年系统性红斑狼疮患者的数量将增加。蚀变的复杂相互作用 免疫力、压力和长期慢性疾病的发病率可能会使所有SLE患者-无论 年龄但在那里 是否有证据表明，即使是相对年轻的SLE患者也报告了感知到的身体和认知 功能障碍。在最近完成的一项试点研究中(n=60)，附属于正在进行的格鲁吉亚人组织的 针对狼疮(目标)队列，我们对身体和认知进行了详细的面对面评估 功能正常。我们发现，身体和认知能力的水平，自我报告的身体功能， 在日常生活活动、跌倒和社区活动方面的独立性与这些人相似或更差 见于老年非系统性红斑狼疮人群。这些结果表明，一种新的老年护理方法可能是 对系统性红斑狼疮有益。为了开始实现这一目标，我们首先需要更好地描述减损负担的特征 真实世界中SLE人群的身体和认知功能，以确定哪些资源可以 需要支持SLE患者随着年龄的增长而发挥作用，这些资源对哪些患者来说最多 需要的。此外，了解年龄、疾病活动性、累积器官的相对贡献 损害、炎症和其他患者特征对SLE环境中的损害将有助于识别 最有可能受损的患者和目标人群水平的干预措施，以降低与贫困相关的风险 功能正常。最后，了解损伤如何影响这一人群的健康结果将有助于 通过提供关于最具预测性的功能的信息，进行风险分层和预防昂贵的护理 在系统性红斑狼疮患者中的测量。Goal凭借其丰富的、现有的纵向数据和持续的人口- 基于不同的SLE患者队列，为弥补这些差距提供了独特的机会。我们的研究旨在： (I)在450人的队列中评估各年龄组的身体和认知功能障碍的负担和模式 (Ii)找出病人身体和认知功能受损的危险因素；及(Iii) 利用二级数据和关联数据估计功能测量与结果之间的关联。我们会 评估目标中多个身体和认知功能领域的功能障碍患病率 患者，总体上和按年龄，使用经过验证的工具。然后，我们将评估与 社会人口学和临床特征以及测量的炎症标记物，总体上和按年龄组。 最后，可以利用目标数据及其管理数据的链接来检查 功能参数包括生活质量、抑郁、工作/残疾状况、死亡率和严重发病率， 包括住院和进展为终末期肾病。

PROJECT SUMMARY The increasing pool of older individuals in the U.S. population who can develop late-onset systemic lupus erythematosus (SLE) and longer life expectancy for younger SLE patients will likely result in a dramatic increase in the numbers of older SLE patients over the next 20 years. The complex interactions of altered immunity, stress, and morbidity from long-standing chronic disease potentially put all SLE patients—regardless of age—at risk for functional impairments, which are generally associated with the aged population. But there is some evidence that even relatively young SLE patients have reported perceived physical and cognitive functional impairment. In a recently completed pilot study (n=60) ancillary to the ongoing Georgians Organized Against Lupus (GOAL) cohort, we performed detailed, in-person assessments of physical and cognitive functioning. We found that levels of physical and cognitive performance, self-reported physical functioning, independence in activities of daily living, falls, and community mobility were similar to, or worse than, those seen in older non-SLE populations. These results suggest that a novel, geriatric approach to care may be beneficial in SLE. To begin to address this goal, we first need to better characterize the burden of impairment of physical and cognitive functioning in a real-world SLE population, in order to determine what resources may be needed to support SLE patients’ functioning as they age, and for which patients these resources are most needed. Furthermore, understanding the relative contributions of age, disease activity, cumulative organ damage, inflammation, and other patient characteristics to impairment in the setting of SLE will help to identify patients most likely to be impaired and target population-level interventions to reduce risk associated with poor functioning. Finally, understanding how impairment affects health outcomes in this population will assist with risk stratification and prevention of costly care, by providing information on the most predictive functioning measures among patients with SLE. GOAL, with its rich, existing longitudinal data and ongoing, population- based, diverse cohort of SLE patients, provides a unique opportunity to address these gaps. Our study aims to: (i) assess the burden and patterns of physical and cognitive dysfunction across age groups in a cohort of 450 SLE patients; (ii) identify patient risk factors for impairment in physical and cognitive functioning; and (iii) estimate associations of functioning measures with outcomes utilizing secondary and linked data. We will estimate the prevalence of dysfunction on multiple physical and cognitive functioning domains among GOAL patients, overall and by age, using validated instruments. We will then estimate associations of functioning with sociodemographic and clinical characteristics and measured inflammatory markers, overall and by age group. Finally, GOAL data and its linkage of administrative data can be leveraged to examine associations of functioning parameters with quality of life, depression, work/disability status, mortality, and severe morbidity, including hospitalization and progression to end-stage renal disease.