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.

项目概要/摘要 背景：多重发病，定义为两种或多种身体或精神慢性疾病同时发生， 在全球范围内流行并不断上升。多种疾病的新测量方法提供了对谱系的独特见解， 需要多种共病的模式和程度。目前的措施未能提供足够的 设计、评估和实施多层次临床相关干预措施的背景。 目标：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 解决目前影响多发病结果研究的关键限制的措施和工具。 具体目标： (1) 在生命历程的各个阶段制定个性化的累积负担衡量标准， 基于患者的观点，使用病情加权负担权重和风险因素； (2) 创建一套 基于网络的可视化可供任何类型的群体使用； (3) 将累积负担应用于独立的 镰状细胞病患者队列测试实施情况并指导未来向其他队列的传播。 研究设计：基于我们现有的累积负担框架的两项新颖措施将被 使用 St. Jude 终生队列 (SJLIFE) 研究的数据开发，该研究是一个大型儿科临床队列 癌症幸存者。首先，我们将使用以下方法为个人制定一种个性化的多病风险测量方法： 泊松过程的回归框架，提供对模式和特征的终身变化的见解 多种慢性病的严重程度和相关的关键危险因素。二、落实减负 权重，一组从效用权重（我们也将计算）派生的特定条件权重，使用 SJLIFE 数据以纳入患者的观点。为了使用/共享指标，敏捷方法 软件开发将用于创建动态、交互式的基于网络的可视化。最后，使用 实施研究的综合框架，我们将采用累积负担法来研究 第二组由患有镰状细胞病的成人和儿童组成，以促进多发病 国家研究重点，并研究其他人如何将我们的创新措施应用于他们的群体。 意义：我们制定累积负担措施是为了克服一些紧迫的困难 PAR-20-179 确定的当前多发病措施。这项拟议的研究旨在建立在我们之前的基础上 通过结合个性化风险预测和患者报告的结果来发挥作用。此外，我们认识到 制定新措施和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，我们将创建可视化工具来帮助调查人员分享 累积负担结果并使用实施研究其应用的障碍和推动因素 科学方法。我们预计我们的工作将产生一套可视化模板和模块化应用 方法资源将为临床医生、研究人员、倡导团体和政策制定者提供机会 揭示影响我们社会几乎每一个亚群体的日益严重的多重疾病问题。