Measuring Symptom Clusters in People with Sudden-Onset Disabilities

项目总结/摘要 突发性损伤-如获得性损伤或对大脑，脊髓和主要神经元的损伤 极端-在瞬间开始并且通常不能逆转。虽然有可能在不同程度上 身体、功能、心理和/或认知恢复与康复，这些损伤往往导致 终身和终身残疾。此外，许多这样的伤害发生在年轻人身上， 积极，健康。大约有258万例新的脑部、脊柱或肢体受伤， 据估计，每年有1445万人生活在美国，长期残疾。 在这些情况下，突发性损伤是美国最常见的发病原因。 为如此众多的人提供改善结果的宝贵机会， 更好地了解这些人长期经历的复杂症状模式， 提供高质量的临床护理。症状聚类学为实现这一目标提供了一种理想的方法。 这个项目的广泛的，长期的目标是了解复杂模式的症状后， 获得性脑、脊柱或肢体损伤，以便改善临床护理。症状聚类具有 已被证明可作为针对复杂医学状况（例如癌症）的个性化医疗的策略。 然而，在文献中存在几个显著的空白，包括需要将这些方法扩展到 其他临床组，定义症状群的特征，确定工具和指标， 测量症状集群，并应用新的分析策略来检测症状集群。 这项工作将利用十多年的调查人员以前的定性和定量工作， 这些临床人群的大型多中心研究。特别是，现有的数据集将重新分析， 新的症状聚类技术。这些新分析的结果将用于识别和表征 获得性残疾患者最重要的症状群。然后，一个新的，更多样化的 将收集和评估大脑、脊柱或肢体后天损伤的个体样本， 检查这些症状群的普遍性和稳定性，以便在康复中和康复中使用 人口。最后，研究结果将用于生成指导方针和临床工具， 集群进入临床实践。 这项工作将通过四个目标来完成。目标1：确定跨诊断和特定条件 创伤性损伤个体的症状群。目标2：探索普遍性， 在获得性糖尿病个体的不同样本中，目标1中确定的症状群的可重复性 残疾。目的3：纵向检查不同人群中症状群的稳定性和预测效用。 获得性残疾人样本。目标4：制定指南和临床工具， 解释后天残疾个体的症状群。

Project Summary/Abstract Sudden-onset injuries—such as acquired injuries or insults to the brain, spinal cord, and major extremities—begin in an instant and typically cannot be reversed. While there is potential for varying degrees of physical, functional, psychosocial, and/or cognitive recovery with rehabilitation, these injuries often result in life-long and life-altering disabilities. Furthermore, many such injuries occur in individuals who are young, active, and otherwise healthy. With the approximately 2.58 million new injuries to the brain, spine, or limb that occur each year, and an estimated 14.45 million individuals living in the U.S. with long-term disabilities related to these conditions, sudden-onset injuries are some of the most common causes of morbidity in the U.S. Given the invaluable opportunity to improve outcomes for such a large number of individuals, there is a vital need to better understand the complex patterns of symptoms experienced by these individuals in the long term to inform high-quality clinical care. Symptom clustering science offers an ideal method to achieve this goal. This project’s broad, long-term objective is to understand the complex patterns of symptoms displayed after acquired injuries to the brain, spine, or limb, so that clinical care can be improved. Symptom clustering has proven useful as a strategy for personalized medicine with complex medical conditions, such as cancer. However, there are several significant gaps in the literature, including the need to expand these methods to other clinical groups, define the characteristics of symptom clusters, identify instruments and metrics for measuring symptom clusters, and apply novel analytic strategies for detecting symptom clusters. This work will leverage over a decade of the investigators’ prior qualitative and quantitative work on several large, multi-site studies with these clinical populations. In particular, existing data sets will be reanalyzed using new symptom clustering techniques. Results from these new analyses will be used to identify and characterize the most important symptom clusters for individuals with acquired disabilities. Then, a new, more diverse sample of individuals with acquired injuries to the brain, spine, or limb will be collected and evaluated to examine the generalizability and stability of these symptom clusters for use within and across rehabilitation populations. Last, the findings will be used to generate guidelines and clinical tools to translate symptom clusters into clinical practice. This work will be accomplished through four aims. Aim 1: Identify transdiagnostic and condition-specific symptom clusters present in individuals with traumatic injuries. Aim 2: Explore the generalizability and reproducibility of the symptom clusters identified in Aim 1 in a diverse sample of individuals with acquired disabilities. Aim 3: Examine longitudinally the stability and predictive utility of symptom clusters in a diverse sample of individuals with acquired disabilities. Aim 4: Develop guidelines and clinical tools for assessing and interpreting symptom clusters in individuals with acquired disabilities.