Epidemiology and Surveillance: Gaps and Opportunities

Transcription

1 The Public Health Dimensions of the Epilepsies Epidemiology and Surveillance: Gaps and Opportunities Wayne H. Giles, MD, MS Director, Division of Adult and Community Health CDC National Center for Chronic Disease Prevention and Health Promotion

2 Review: Key Ongoing Surveillance and Epidemiologic Research Activities Supported by the CDC Epilepsy Program Behavioral Risk Factor Surveillance System (BRFSS) and the National Health Interview Survey (NHIS) Questions on prevalence, seizure frequency, access to specialty care, quality of life Population-based studies of epilepsy prevalence or incidence Focus on health disparities, patterns of health care, and predictors of outcomes Reference:

3 Comparing BRFSS Reported Seizure Remission with Current Optimum "Optimum" Response of Seizures to AED Therapy BRFSS Reported Recent Seizures Not Remitting 30% Remit 1st Rx 50% Remit Revised Rx 20% Recent Sz 44% No Recent Sz 56% A higher proportion of PWE in BRFSS survey report recent seizures than expected w/ optimum treatment (44% vs. <30%).

4 A Third of People with Epilepsy AND Recent Seizures Have Not Seen a Neurologist in Past Year No Recent Sz Recent Sz 56% 44% Neuro Visit Last Year No Neuro 29% Visit 15% Source: Behavioral Risk Factor Surveillance System, 13 States, 2005 MMWR 2008; 57(SS-6)

5 Why Does CDC Emphasize Populationbased Studies of Epilepsy? Studies have a defined base or denominator, allowing calculation of incidence rates or prevalence Key issue is representativeness of the population under study Findings from representative populations are generalizable, i.e., reliably informative about the general population of people with epilepsy.

6 Gaps Consider these CDC-supported surveillance findings: ~44% of people with epilepsy report recent seizures nearly one-third more than expected Of those having recent seizures, one third have not seen a neurologist or epileptologist in the past year We need additional population-based epidemiologic research on: Barriers to receiving care Barriers to successful treatment Strategies for improvement

7 Gaps Consider CDC-supported surveillance findings that people with epilepsy report: lower household incomes and higher unemployment Reduced health-related quality of life We need additional population-based epidemiologic research on: Barriers to participation in society Epilepsy comorbidities and their consequences Strategies for improvement

8 Gaps Consider epidemiologic studies of epilepsy mortality reporting: ~ 2 3 times increased overall mortality ~ 1/1000 annual risk of sudden unexpected death in epilepsy (SUDEP) We need a population-based surveillance system for epilepsy mortality addressing: SUDEP Injuries unintentional and intentional

9 Opportunities The Patient Protection & Affordable Care Act (2010) Promotes quality-of-care measures and reporting Improves availability of health insurance Promotes use of electronic medical records Should facilitate access to data important to surveillance and epidemiologic studies of epilepsy Opportunity for study to update and assess changes in cost of epilepsy (indirect and direct)

10 Opportunities A CDC-NINDS collaboration for populationbased epilepsy mortality surveillance CDC/NINDS meeting of experts in October 2010 Announcement for pilot study in a single state State Medical Examiner-based Standard protocol for investigation and post-mortem examination Basis for tissue registry and genetic studies Focus on sudden unexpected death in epilepsy (SUDEP)

11 Opportunities A CDC-NINDS collaboration for ongoing population-based incident cohort studies (or incident case registries) Support epidemiologic research on incidence, comorbidities, patterns of care, early predictors of outcomes, other determinants of outcomes. Could serve as a representative source population for clinical research (NINDS) Some could be focused on population strata at increased risk (e.g., children)

12 Summary: Recommended Priorities Continue CDC support for population-based epidemiologic studies of epilepsy in representative localities Develop CDC/NINDS supported population surveillance of SUDEP and other epilepsyrelated mortality studies

13 Summary: Recommended Priorities Develop CDC/NINDS population-based incident epilepsy cohort / registry for epidemiologic and clinical study. Utilize electronic health records to examine patterns of care

14 Thank you

15 End

16 Appended Slides For Questions & Answers

17 A Possible Model for an Epilepsy Registry: The National ALS Registry Authorized in Public Law (2008) Purpose to describe ALS incidence, prevalence, demographics, & risk factors Principal registration sources: National data sets (VHA, Medicare, Medicaid) Web-based (through specialty clinics and other physician offices) Case validation protocols Population-based Initiated in 7-9 state or local jurisdictions