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Principal Investigator: Nickhill Hitesh Bhakta
Organization: ST. JUDE CHILDREN'S RESEARCH HOSPITAL
Fiscal Year: 2024
Award: $98,612
Funding agency: National Cancer Institute
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.
Terms: <0-11 years old><21+ years old><Accounting><Address><Adoption><Adult><Adult Human><Advocacy><Affect><Age><Caring><Catalogs><Causality><Child><Child Youth><Childhood><Childhood Cancer Treatment><Children (0-21)><Chronic><Clinical><Clinical Oncology><Cohort Studies><Complex><Concurrent Studies><Consolidated Framework for Implementation Research><Consolidated Framework for Implementation Science><Consolidated Framework for Implementing Change><Data><Dissemination and Implementation><Ensure><Epidemiologic Methods><Epidemiologic Research><Epidemiologic Studies><Epidemiological Methods><Epidemiological Studies><Epidemiological Techniques><Epidemiology><Epidemiology Research><Etiology><Event><Frequencies><Future><Goals><Hb SS disease><HbSS disease><Health><Health Care Providers><Health Personnel><Health Policy><Health Services><Health system plans><Healthcare Providers><Healthcare worker><Hemoglobin S Disease><Hemoglobin sickle cell disease><Hemoglobin sickle cell disorder><High Prevalence><Incidence><Individual><Individualized risk prediction><Intervention><Intervention Strategies><Investigators><Life><Life Cycle><Life Cycle Stages><Long Term Survivorship><Measures><Methodology><Methods><Methods Epidemiology><Morbidity><Morbidity - disease rate><On-Line Systems><Online Systems><Outcome><Outcomes Research><Output><Pathology><Patient Outcomes Assessments><Patient Reported Measures><Patient Reported Outcomes><Patients><Pattern><Pediatric Cancer Treatment><Pediatric cohort><Personal Satisfaction><Policies><Policy Maker><Population><Predicting Risk><Prevalence><Prevention><Process><Publishing><Recurrence><Recurrent><Research><Research Design><Research Personnel><Research Priority><Research Resources><Researchers><Resources><Risk><Risk Factors><Saint Jude><Saint Jude Children's Cancer Center><Saint Jude Children's Research Hospital><Severities><Sickle Cell><Sickle Cell Anemia><Societies><St. Jude><St. Jude Children's Cancer Center><St. Jude Children's Research Hospital><St. Jude Children's Research Hospital Comprehensive Cancer Center><St.Jude Children's Cancer Center><St.Jude Children's Research Hospital><St.Jude Children's Research Hospital Comprehensive Cancer Center><Study Type><Subgroup><Testing><Therapeutic><Time><Variant><Variation><Visual><Visualization><Visualization software><Vulnerable Populations><Weight><Work><adulthood><ages><analytical tool><catalog><causation><childhood cancer survivor><chronic mental illness><clinical care><clinical decision-making><clinical relevance><clinically relevant><co-morbid><co-morbidity><cohort><comorbidity><design><designing><develop software><developing computer software><disease causation><epidemiologic><epidemiologic investigation><epidemiological><epidemiology study><forecasting risk><health care personnel><health care policy><health care worker><health provider><health related quality of life><health workforce><healthcare personnel><healthcare policy><implementation science><improved><individual patient><individualized predictions><innovate><innovation><innovative><insight><interest><interventional strategy><kids><life course><longterm survivorship><medical personnel><multidisciplinary><multimorbidity><multiple chronic conditions><novel><online computer><pediatric><pediatric cancer survivor><persistent mental illness><personalized predictions><personalized risk prediction><predict risk><predict risks><predicted risk><predicted risks><predicting risks><predictive risk><predicts risk><prospective><research study><response><risk prediction><risk predictions><serious mental disorder><serious mental illness><severe mental disorder><severe mental illness><sickle RBC><sickle cell disease><sickle cell disorder><sickle disease><sickle erythrocyte><sickle red blood cell><sicklemia><software development><study design><tool><treatment planning><treatment provider><visualization tool><vulnerable group><vulnerable individual><vulnerable people><web based><weights><well-being><wellbeing><youngster>