Measuring Lifelong Multimorbidity with Patient Perspectives: Implementing and Visualizing the Cumulative Burden Methodology Across Cohorts

从患者的角度衡量终身多重发病率：跨队列实施和可视化累积负担方法

• 批准号: 10590654
• 负责人: Nickhill Hitesh Bhakta
• 金额: $ 66.43万
• 依托单位: ST. JUDE CHILDREN'S RESEARCH HOSPITAL
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-03-11 至 2026-02-28
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10590654
• 关键词: Accounting; Address; Adoption; Adult; Advocacy; Affect; Age; Caring; Catalogs; Child; Childhood; Childhood Cancer Treatment; Chronic; Clinical; Clinical Oncology; Cohort Studies; Complex; Consolidated Framework for Implementation Research; Data; Dissemination and Implementation; Ensure; Epidemiologic Methods; Epidemiology; Etiology; Event; Frequencies; Future; Goals; Health; Health Personnel; Health Policy; Health Services; Health system plans; High Prevalence; Incidence; Individual; Intervention; Life; Life Cycle Stages; Long Term Survivorship; Measures; Methodology; Methods; Morbidity - disease rate; Online Systems; Outcome; Outcomes Research; Output; Pathology; Patient Outcomes Assessments; Patients; Pattern; Pediatric cohort; Personal Satisfaction; Policies; Policy Maker; Population; Prevalence; Prevention; Process; Publishing; Recurrence; Research; Research Design; Research Personnel; Research Priority; Resources; Risk; Risk Factors; Saint Jude Children' s Research Hospital; Severities; Sickle Cell; Sickle Cell Anemia; Societies; Subgroup; Testing; Therapeutic; Time; Variant; Visual; Visualization; Visualization software; Vulnerable Populations; Weight; Work; analytical tool; childhood cancer survivor; clinical care; clinical decision-making; clinically relevant; cohort; comorbidity; design; epidemiology study; health related quality of life; implementation science; improved; individual patient; innovation; insight; interest; multidisciplinary; multiple chronic conditions; novel; personalized predictions; personalized risk prediction; prospective; research study; response; risk prediction; severe mental illness; software development; tool; treatment planning

PROJECT SUMMARY/ABSTRACT Background: Multimorbidity, defined as the co-occurrence of two or more physical or mental chronic illnesses, is prevalent and rising globally. New measures of multimorbidity that provide unique insights into the spectrum, pattern and magnitude of multiple co-morbid conditions are needed. Current measures fail to provide adequate context from which to design, evaluate, and implement multilevel clinically-relevant interventions. Objective: In response to PAR-20-179, we propose to develop, visualize and apply a modular suite of novel measures and tools to address the critical limitations currently impacting multimorbidity outcomes research. Specific Aims: (1) Develop personalized cumulative burden measures, over various stages of the life-course, based on patient perspectives using condition-weighted burden weights and risk factors; (2) Create a suite of web-based visualizations for use by any type of cohort; (3) Apply the cumulative burden to an independent cohort of sickle cell disease patients to test implementation and guide future dissemination to other cohorts. Study design: Two novel measures, which built on our existing cumulative burden framework, will be developed using data from the St. Jude Lifetime Cohort (SJLIFE) study, a large clinical cohort of pediatric cancer survivors. First, we will develop a personalized measure of multimorbidity risk for an individual using a regression framework of the Poisson process to provide insights into lifelong variations in patterns and magnitude of multiple chronic conditions and associated key risk factors. Second, we will implement burden weights, a set of condition-specific weights derived from utility weights (which we will also calculate) using SJLIFE data in order to incorporate patient perspectives. To use/share the metrics, the Agile approach to software development will be employed to create dynamic, interactive web-based visualizations. Finally, using the consolidated framework for implementation research, we will apply the cumulative burden method to study multimorbidity in a second cohort comprised of adults and children with sickle cell disease in order to advance national research priorities and study how others may our innovative measures to their cohorts. Significance: Our cumulative burden measure was created to overcome some of the pressing difficulties with current multimorbidity measures identified by PAR-20-179. This proposed study seeks to build on our prior work by incorporating personalized risk prediction and patient-reported outcomes. Additionally, we recognize that developing new measures and publishing our methods are insufficient to ensure broad use and impact. To support effective implementation and dissemination, we will create visual tools that help investigators share cumulative burden results and study the barriers and enablers of their application using an implementation science approach. We anticipate our work will yield a suite of visualization templates and modular applied method resources that will enable clinicians, researchers, advocacy groups, and policymakers an opportunity to shed light on the growing problem of multimorbidity affecting nearly every sub-group of our society.

项目摘要/摘要 背景：多种疾病，定义为两种或多种身体或精神疾病的共同发生， 全球盛行，并且在全球上升。多种多发性的新措施，为频谱提供了独特的见解， 需要多个合并条件的模式和大小。目前的措施无法提供足够的 设计，评估和实施多层次临床上与临床相关的干预措施的上下文。 目的：为了响应Par-20-179，我们建议开发，可视化和应用一套新颖的模块化套件 措施和工具以解决当前影响多发生结果研究的关键局限性。 具体目的：（1）在生命过程的各个阶段制定个性化的累积负担措施， 基于患者的观点，使用状态加权负担重量和危险因素； （2）创建一套 基于Web的可视化量用于任何类型的队列； （3）将累积负担应用于独立 镰状细胞疾病患者的队列测试实施并指导未来对其他人群的传播。 研究设计：两项基于我们现有累积负担框架的新颖措施将是 使用St. Jude Lifetime Cohort（SJLife）研究的数据开发，这是一项大量的临床群体 癌症幸存者。首先，我们将对使用A的个人制定个性化的多种病风险衡量标准 泊松过程的回归框架，以洞悉模式和模式的终生变化 多种慢性病和关键危险因素的大小。其次，我们将实施负担 权重，一组从实用性权重得出的特定条件权重（我们还将计算） SJLIFE数据以纳入患者的观点。要使用/共享指标，敏捷的方法 软件开发将被用来创建动态的，基于Web的可视化。最后，使用 用于实施研究的合并框架，我们将应用累积负担方法来研究 由成年人和镰状细胞疾病的儿童组成的第二个队列中的多种疾病，以促进 国家研究的重点并研究其他人如何对他们的同伙进行创新措施。 意义：我们创建了我们的累积负担措施，以克服一些紧迫的困难 当前的多种多发性措施由Par-20-179确定。这项拟议的研究旨在以我们先前的 通过合并个性化风险预测和患者报告的结果来工作。另外，我们认识 制定新措施并发布我们的方法不足以确保广泛使用和影响。到 支持有效的实施和传播，我们将创建视觉工具，以帮助调查人员共享 累积负担结果并使用实施来研究其申请的障碍和推动力 科学方法。我们预计我们的工作将产生一套可视化模板，并应用模块化 方法资源将使临床医生，研究人员，倡导团体和决策者成为机会 阐明了越来越多的多种危机问题影响了我们社会的每个小组。