An Assessment of the State of the Art for Measuring Burden of Illness

Final Report

April 2011

Prepared for:
Ansalan Stewart
U.S. Department of Health and Human Services

Prepared by:
Amanda A. Honeycutt, Thomas Hoerger, Alex Hardee, Linda Brown, and Kevin Smith
RTI International
RTI Project Number: 0212050.005.001

This report is available on the Internet at:
http://aspe.hhs.gov/sp/reports/2011/BurdenOfIllness/index.shtml

This report is only available in PDF format (47 pages) [Section 508 compliant]
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Contents

1. Background
2. Overview of Burden of Illness Measures
   1. Epidemiologic Burden
   2. Economic Burden
   3. Quality of Life
3. Methodological Trends and Needs in Burden of Illness Measurements
   1. Attribution of Burden to a Specific Disease or Risk Factor: Avoiding Double-Counting in Burden Estimates
   2. Summary Measures of Population Health
   3. Valuation of Time Lost to Disease and Disability
   4. Inconsistencies in Quality of Life Measures of Burden and Sources of Those Inconsistencies
4. Data Trends and Needs in Burden of Illness Measurement
   1. State and Local Data on Burden of Illness — More Local Data Are Needed and Desired
   2. Burden of Rare Diseases
   3. Quality of Burden Data from Health Insurance Claims and Other Administrative Data Sources
   4. New Methods to Estimate Deaths Attributable to Disease When Limited Data Are Available
5. Using Burden of Illness to Inform Policy Decision Making
6. Summary of Lessons Learned about Burden of Illness and Issues for Further Consideration
   1. A Single Summary Measure of U.S. and Local Disease Burden May Not Be Needed or Desired
   2. More Work Is Needed on the Allocation of Burden to Specific Diseases
   3. More Work Is Needed on Preference-Based Measurement of Quality of Life
   4. Local Estimates of Disease Burden Are Needed to Inform Local Public Health Decision Making
   5. Burden Measures Are Important but Are Not Sufficient to Inform All Policy Decisions

References

Appendices

1. Literature Review (PDF, 178 pages)
2. Environmental Scan (PDF, 49 pages)
3. Summary of the Roundtable Meeting Presentations and Discussions (PDF, 12 pages)
4. Comparing Different Measures of 1996 Disease Burden in the United States for 20 Diseases (PDF, 6 pages)

Background

Burden of illness measures provide information about the impacts of diseases and risk factors on individuals, governments, and society as a whole. Burden measures quantify diverse effects of diseases and risk factors using a variety of units, measurement techniques, and levels of aggregation. Two examples of burden measures are healthy life years lost, which summarize the disability and mortality impacts of disease in a single measure; and cost of illness, which measures disease burden in terms of medical costs and productivity losses. Burden of illness estimates may be useful for establishing a population disease burden baseline against which future progress toward achieving disease prevention and health promotion goals may be measured. Additionally, as health care systems respond to increasing demand for and rising costs of medical care, burden measures offer the potential to assess the efficiency of resource allocations to prevent or treat specific diseases and improve health.

The purpose of this project was to collect information on current uses of burden of illness measures, trends in burden of illness measurement, and the methodological and data challenges that affect burden of illness measurement and reporting. We conducted three main activities to collect and compile information about burden of illness measurement: a literature review, an environmental scan, and a roundtable meeting with experts. The literature review summarizes key burden of illness measures and measurement approaches and challenges for implementing each measure. The literature review is provided in its entirety in Appendix A. The environmental scan describes current efforts, innovative initiatives, and gaps in measures of the disease burden in the United States. To conduct the environmental scan, we held telephone interviews with 13 burden of illness experts from across the United States with expertise in various types of burden of illness measures. We also searched federal health agency and private foundation Web sites to identify new initiatives and new or recent grant awards focused on burden of illness measures or measurement. The resulting environmental scan is provided in Appendix B of this report.

Our final activity was to conduct a daylong roundtable meeting of experts on November 10, 2010, in Washington, DC. Fifteen government and nongovernment policy and burden of illness experts participated in the meeting, during which we discussed key challenges for burden of illness measurement (presentations from that meeting are available upon request). At the meeting’s conclusion, all participants contributed to a discussion of burden of illness areas of consensus and areas needing further consideration. A summary of the roundtable meeting presentations and discussions is provided in Appendix C.

This report compiles and summarizes key findings from all three project activities: the literature review, the environmental scan, and the roundtable meeting. The purpose of the report is to provide policy makers with an understanding of the current landscape regarding metrics, methods, and data for quantifying the burden of illness. The report is therefore expected to serve as a primer on burden of illness for Office of the Assistant Secretary for Planning and Evaluation (ASPE) staff and other federal policy makers so that burden estimates can be better utilized in policy development. In Section 2, we provide a brief overview of commonly used burden of illness measures. Section 3 describes key methodological trends and needs in burden of illness measurement, and Section 4 describes the main data trends and needs in burden of illness measurement. Section 5 discusses issues surrounding the use of burden of illness data for making policy decisions, and Section 6 summarizes lessons learned from this project about burden of illness and discusses issues for further consideration.

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Last updated:  01/11/12