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

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.