DIRECT COST OF EPILEPSY : AVAILABLE ESTIMATES AND RECOMMENDATIONS FOR FUTURE DATA COLLECTION

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1 INSTITUTE OF MEDICINE Workshop on Public Health Surveillance, Population Health Research, and Data Collection for the Epilepsies March 21, DIRECT COST OF EPILEPSY : AVAILABLE ESTIMATES AND RECOMMENDATIONS FOR FUTURE DATA COLLECTION David R. Lairson, Ph.D. University of Texas at Houston - School of Public Health

2 Direct Cost of Epilepsy Questions 2 What is the direct cost impact and how is it measured? How do direct costs vary by: time? prognostic groups? What are gaps in knowledge about direct costs? What data are needed to close the gaps in knowledge? What is the future for direct cost data collection?

3 Billions What is the direct cost of epilepsy? 3 Average Annual Direct Cost, 2011 $ Total Annual Nat l Direct Cost, 2011 $ $6,000 $14.0 $5,000 $12.0 $4,000 $3,000 $2,000 $10.0 $8.0 $6.0 $4.0 $1,000 $2.0 $0 Begley 2000 Yoon 2009 $0.0 Begley 2000 Yoon 2009

4 How is the direct cost impact measured? 4 Sum of (unit price x quantity) of medical and nonmedical services attributed to epilepsy. Measurement varies by: Representativeness of patients by socio-demographic and disease characteristics and their sources of care Time period covered by study Comprehensiveness of cost elements included Case identification & cost attribution methods Selection of unit costs for valuing services

5 How do direct costs vary by time and prognostic group? 5 $8,000 Average Annual Direct Cost of Incident Cases by Prognostic Group and Year, 2011 prices $7,000 $6,000 $5,000 $4,000 $3,000 Yr1 Yr2 Yr3 Yr4 $2,000 $1,000 $- All Grp1 Grp2 Grp3 Grp4 Begley et al., 2001

6 What are the gaps in knowledge about direct costs? 6 Representative population based U.S. data Current data on utilization & cost of treatments & diagnostic services Comprehensive cost measurement, including non-medical direct cost Accurate methods for case identification and attribution of cost to epilepsy Appropriate unit cost of services for policy analysis and decision-making

7 What data are needed to close the gaps in knowledge? 7 Develop current periodic nationally representative data systems to include all levels of severity and types of epilepsy. Disease registries combined with Medicare, Medicaid, and private insurance claims data Medical Expenditure Panel Survey (expanded) Identify a comprehensive set of cost items and Conduct special periodic surveys of nonmedical cost Specify unit costs for alternative decision-makers (Lipscomb et al., 2009; South Carolina Dept. HHS, 2008; Fryback et al., 2004)

8 What is the future for direct cost data collecting? 8 Disease registries: look to cancer example using the SEER Medicare data for cost of illness, comparative effectiveness, and cost-effectiveness studies (Warren et al., 2002). Electronic medical record systems: may provide less costly and more timely access to accurate healthcare utilization and cost data (Fife et al., 2008)

9 Summary 9 Economic Evaluation of Healthcare will become more relevant in the U.S. healthcare system. An accurate up-to-date evidentiary framework is needed for COI and CEA studies in epilepsy. Consider further developing: Epilepsy disease registries linked to claims data & EMRs National household surveys of non-medical costs Standard costing methods (Tunis, 2009)

10 References: Epilepsy Studies 10 Begley C.E., Famulari M., Annegers J.F., Lairson D.R., Reynolds T.F., Coan S., Dubinsky S., Newmark M.E., Leibson C., So E.L., Rocca W.A. The cost of epilepsy in the United States: an estimate from population-based clinical and survey data. Epilepsia, 2000 Mar;41(3): Begley C.E., Lairson D.R., Reynolds T.F., Coan S., Early treatment cost in epilepsy and how it varies with seizure type and frequency. Epilepsy Research, 2001 Dec;47(3): Griffiths R.I., Schrammel P.N., Morris G.L., Wills S.H., Labiner D.M., Strauss M.J. Payer costs of patients diagnosed with epilepsy. Epilepsia, 1999 Mar;40(3): Halpern M., Rentz A., Murray M. Cost of illness of epilepsy in the US: comparison of patient-based and population-based estimates. Neuroepidemiology, 2000 Mar-Apr;19(2): Ivanova J.I., Birnbaum H.G., Kidolezi Y., Qiu Y., Mallett D., and Caleo S. Direct and indirect costs associated with epileptic partial onset seizures among the privately insured in the United States. Epilepsia, 2010 May;51(5): Epub 2009 Dec 7. Murray, M.I., Haplern, M.T., and Leppik, I.E. Cost of Refractory Epilepsy in Adults in the USA. Epilepsy Research, 1996 Mar;23(2): South Carolina Dept. of Health & Human Services, Report of the study committee to develop a statewide comprehensive service delivery system for persons with epilepsy. July 1, Yoon D., Frick K.D., Carr D.A., Austin J.K. Economic impact of epilepsy in the United States. Epilepsia, 2009 Oct;50(10): Epub 2009 Jun 8.

11 References: Cost Methods & Data 11 Drummond, M.F., Sculpher, M.J., Torrance G.W., O'Brien, B.J.0, and Stoddart, G.L. Methods for the Economic Evaluation of Health Care Programmes. Third Edition, Oxford University Press, 2005 Fife CE, Walker D, Thomson B, Otto G. The safety of negative pressure wound therapy using vacuum-assisted closure in diabetic foot ulcers treated in the outpatient setting. Int Wound J (Suppl 2): Fryback, D. and B. Craig, Measuring Economic Outcomes of Cancer. Journal of the National Cancer Institute Monographs, No. 33, pp , Gold, Siegel, Russell, and Weinstein, Eds. Cost Effectiveness in Health and Medicine, Oxford University Press, Lipscomb J., Yabroff K., Brown M., Lawrence W., Barnett P. Health care costing: Data, methods, current applications. Medical Care, (7): S1-S6. Tunis, S., Strategies to Improve Comparative Effectiveness Research Methods and Data Infrastructure. Implementing Comparative Effectiveness Research: Priorities, Methods, and Impact, Brookings Institution, June 2009 Warren J., Klabunde C., Schrag D., Overview of the SEER-Medicare data: content, research, applications, and generalizability to the U.S. elderly population. Medical Care 2002; 40 (suppl 8): IV-3 IV-18.

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