Quantifying Disease-Specific Indirect Economic Burden Using Survey Research Methods as a Component of Estimating the Total Economic Burden of a Disease

OBJECTIVES: The total economic burden of disease includes direct medical and indirect costs. Direct medical costs are frequently measured and relevant to payers and health systems. However, indirect costs are rarely included in economic burden estimates despite their relevance. We developed a methodological framework for estimating the annual, disease-specific, indirect economic burden of disease. Health technology assessment (HTA) processes can leverage total disease burden results to measure the value of treatments at alleviating that burden. This research aimed to develop a framework to measure the indirect burden of disease.

METHODS: Published research for measuring the indirect burden of disease and its components were reviewed. Methodologies were aggregated and adapted to develop a conceptual framework and survey instruments – for patients and caregivers – for estimation of the annual indirect burden of a disease through measurement of healthcare costs not covered by insurance, non-medical costs, formal/informal caregiving, reduced work productivity, absenteeism, lost social productivity, loss of earnings due to forced early retirement, and loss of earnings due to other forced occupational changes. All impacts were monetized and annualized.

RESULTS: The methodological framework outlines how the indirect burden of disease across the above domains can be estimated and incorporated into total economic burden estimates. The resulting survey instruments can be adapted to specific diseases for fielding in patients and caregivers. Leveraging this framework across multiple diseases can allow for comparisons in drivers of disease burden.

CONCLUSIONS: This study built upon available methodologies to measure the economic indirect burden of disease using survey research. Applied use of this framework can be paired with direct medical cost estimates to estimate the total burden of disease, which is crucial for informed healthcare decision-making. Measuring the total burden of disease can also be leveraged to estimate the social value of medical innovations in global HTA and value assessment.