Epilepsy Across the Spectrum Promoting Health and Understanding (2012) / Chapter Skim
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2 Surveillance, Measurement, and Data Collection
2 Surveillance, Measurement, and Data Collection
Pages 49-108
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From page 49... ...
The increasing use of electronic health records, which can be linked across providers and payers, may facilitate the gathering of surveillance data. Data collection is the first step toward better classification and understand ing of the problems individuals with epilepsy and their families face.
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From page 50... ...
However, current epilepsy surveillance resources and mechanisms are inadequate, and improvements are necessary to increase understanding of the epidemiologic aspects of epilepsy and to identify effective action in prevention, health care, and community services, as well as education and awareness. At present, public health researchers, policy makers, and advocates are "flying blind" due to the lack of adequate epilepsy surveillance data and infrastructure (Trevathan, 2011)
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From page 51... ...
The information presented in Chapter 1 and throughout this report about the significant burden of the epilepsies on health and quality of life is based on data collected through a variety of surveillance data sources, such as administrative and clinical records, population-based surveys, and registries (discussed later in the chapter)
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From page 52... ...
Records linkage-based research is ongoing in Rochester for a variety of disorders. Data on epilepsy from 1935 to 1994 have been analyzed to provide estimates of epilepsy incidence, prevalence, and cost, as well as information on etiologies, risk factors, and outcomes (e.g., Annegers et al., 1996; Begley et al., 2001; Ficker et al., 1998; Hauser et al., 1991, 1993)
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From page 53... ...
Many of these challenges are shared by clinical researchers as well, who are currently collaborating on the Common Data Elements project (described
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. The following are among the major measurement and methodological considerations that are barriers to epilepsy surveillance and research: a lack of standardization in case ascertainment4 and diagnos • tic accuracy, such as the use of varying definitions and coding algorithms;5 • variations in measurement of health service use, quality, access, and costs; • heterogeneous approaches to assessing the impact of epilepsy on health status and quality of life; and • challenges in identifying and recruiting health care providers and people with epilepsy to participate in surveillance and research projects.
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Educating primary care providers and other health professionals regarding seizures and epilepsy can lead to more accurate diagnoses (Chapter 5) , as can tools such as decision prompts in electronic health records (EHRs)
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Mini-Sentinel pilot project (discussed later in the chapter) to establish validated algorithms that can be applied in surveillance using administrative and claims data, and Kee and colleagues (2012)
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From page 57... ...
, rely on self-reports of physician-diagnosed epilepsy and tend to generate considerably higher prevalence estimates than those from medical records or community-based studies. Following up on an initial identification of persons with epilepsy based on self-report, more in-depth questions and validation or review, such as medical examinations or review of medical records, help to reconcile these estimates.
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From page 58... ...
Epilepsy Group, which have been used by the BRFSS and other population-based surveys, in a sample of patients who receive care at a tertiary care center in Boston. Their findings suggest that prevalence estimates of lifetime and active epilepsy based on self-reports, while slightly higher than estimates based on medical review, are reasonably accurate and valuable for population-based studies.
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, and outcome (e.g., health status) metrics (Andersen and Aday, 1978)
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In addition, epilepsy is known to be associated with mental health conditions and learning disabilities, and the costs associated with these comorbidities are not reflected in current estimates. To accurately assess the direct cost burden of the epilepsies on people with epilepsy and their families, additional work is needed to develop common methodologies that capture nonmedical direct costs in a more comprehensive, valid, and representative way.
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From page 61... ...
. To accurately assess the full burden of epilepsy on people who have the disorder and their families and on the economy of the United States, additional work is needed to develop common methodologies that predict indirect costs in a comprehensive, valid, and representative way.
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From page 62... ...
Demonstration projects that validate the use of specific definitions of epilepsy and criteria for case ascertainment, health care services use, quality of life, and cost measurement are needed to help standardize the current diversity of measures used in surveillance. To ensure validity for all people with epilepsy, these projects should be conducted in a range of 8 HIPAA, the Health Insurance Portability and Accountability Act of 1996, established national privacy standards defining protected health information.
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From page 63... ...
Population health surveys capture many aspects of health conditions and individual characteristics that are well suited for understanding the public health burden of the epilepsies. In the United States, the federal agency responsible for public health surveillance is the CDC.
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BRFSS surveys also include optional modules that states can administer. Some states conduct their own health surveys that include epi lepsy content, such as the California Health Interview Survey (CHIS)
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From page 65... ...
BRFSS surveys have included content about epilepsy only in a few years and in a handful of states. In 2005, 19 participating states asked at least one question about epilepsy, and some asked additional questions about recent seizures and seizure frequency, use of seizure medications, and visits to a neurologist or epilepsy specialist in the previous year (Kobau et al., 2008)
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From page 66... ...
, BRFSS surveys and the California Health Interview Survey (CHIS) both show that a significant percentage of individuals who have had a seizure in the last 3 months report that they are not currently taking seizure medications (26 percent in CHIS in 2003 and 16 percent in 13 states from BRFSS in 2005)
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It compiles data on patient demo graphics (including employment status) , self-reported health status, use of health services, costs and payments by payer source, and health insurance status.
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From page 68... ...
Well-developed registries can be a valuable resource for conditions such as epilepsy that may yield relatively small samples in population surveys and other surveillance data sources. 9 Registries are databases that contain information about people who have something in common, such as women with epilepsy who are pregnant and taking seizure medications.
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From page 69... ...
In addition to pregnancy registries providing opportunities to study the effects of seizure medications on developing fetuses, they can also provide information on the impact of seizures during pregnancy and labor. Further, pregnancy registries can identify whether infants who are born with major congenital malformations had these malformations prenatally diagnosed or identified through prenatal screening, and they can also provide data on the number 10 AED stands for antiepileptic drug.
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For example, in the North American AED Pregnancy Registry, the majority of participants are insured, white, and have a minimum of some college education, making the captured data not representative of the U.S. population (Tomson et al., 2007)
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. In moving forward, the North American AED Pregnancy Registry
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From page 72... ...
These are not small tasks, but pregnancy registries are currently the major source of data on the safety of seizure medications for the developing fetus. An alternative mechanism for this type of data collection may be the creation of EHR linkages of data on the mother's seizure medication use with data on the child's birth outcome, but the capacity to do this has not yet been developed.
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. The comparison and coordinated analysis of their data were possible, in part, because the data compiled through both programs use standards developed by the North American Association of Central Cancer Registries (NAACCR)
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, and the Medicare claims data that SEER links to do not include individuals who receive care through health maintenance organizations (HMOs)
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reported that using IAN's parent-reported data was a reliable method of case ascertainment; however, the web-based registration may introduce bias in the representativeness of the population covered. In April 2011, the Mental Health Research Network announced the development of a new autism spectrum disorders registry that will include 20,000 children and adolescents from 5 health care organizations in Boston, Northern and Southern California, Oregon, Washington, and Georgia (Kaiser Permanente, 2011)
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From page 76... ...
Additionally, birth and death records serve administrative purposes by creating legal records. Common administrative data sources include national and state hospital discharge data; Medicare, Medicaid, and private insurance claims data; and vital statistics (i.e., birth and death records)
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Many of the data elements that are included in hospital discharge data also are included in claims data for every covered visit or service, including demographic information, dates of service, service type, diagnosis and treatment codes, charges, and payments. Claims data are particularly useful because they may include information on a comprehensive set of services, including hospital, physician, and medication use, which can be linked to de-identified individuals to track cases, service use patterns, and costs over time.
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Claims data provide no information on populations lacking health insurance coverage or those who avoid care because co-pays and deductibles are too expensive. Without all-payer claims data (Box 2-7)
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From page 79... ...
. Birth certificates are not a source for data collection on the epilepsies other than as the means to capture data on major congenital malformations, which could be linked to the mother's use of seizure medications, as described in the pregnancy registries section above.
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From page 80... ...
. Second, in some cases, the cause of death may be inappropriately recorded; for example, a review of death certificates with cause of death listed as status epilepticus found that nearly half of the cases were actually SUDEP (Langan et al., 2002)
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Moving forward, the increasing use of EHRs (discussed below) and electronic systems for the capture of discharge and claims data will enable
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From page 82... ...
Prospective studies afford the opportunity to screen for possible cases of epilepsy and then validate the diagnosis using standardized or semi-structured interviews, which provide far greater detail about seizures than the typical medical record. Patients may be screened from hospitals, neurologists' offices, primary care settings, long-term care facilities, and other care settings for studies of epilepsy incidence.
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From page 83... ...
Furthermore, losses to follow-up can limit the representativeness of the study population. Electronic health records As repositories for both administrative and clinical data, the adoption and expanded use of linkable EHRs will enhance the utility of these data for public health surveillance of the epilepsies.
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From page 84... ...
looked at the Heart of New Ulm Project, a possible model for EHR-based surveillance, and found that EHR-based estimates of coronary heart disease risk factors are in line with manually derived estimates. In that project, risk factors for coronary heart disease are derived from EHR data and reviewed annually over 10 years (VanWormer, 2010)
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. EXAMPLES OF ELECTRONIC HEALTH RECORD DATA Box 2-9 SHARING EFFORTS The Health Maintenance Organization Research Network (HMORN)
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The major example of records linkage in epilepsy is the Rochester Epidemiology Project, where records for Minnesota residents of Rochester, Olmsted County, and the region around Olmstead County have been centralized. The system includes medical records from private physician offices, hospitals, and nursing homes, as well as death records.
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From page 87... ...
Henry Ford also has a Comprehensive Epilepsy Program that provides specialty care for people with epilepsy from the metropolitan Detroit area and the surrounding regions. Using administrative data and its EHR, Henry Ford researchers were able to estimate incidence and prevalence of epilepsy and comorbidities in their population using ICD9-CM codes; service use, patterns of care, and care settings were identified as well.
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From page 88... ...
These care data are sent to a central repository and linked with a patient identifier. Previous VA studies successfully linked epilepsy data from multiple VA databases, including an investigation of the impact of epilepsy on health status (Pugh et al., 2005)
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. A year later, the Mini-Sentinel, a 5-year pilot project, was started to develop and evaluate methods to capture these data across a variety of electronic sources (e.g., claims data, EHRs, registries)
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From page 90... ...
should be explored when the full system is established. The Autism and Developmental Disabilities Monitoring Network An example of records linkage for surveillance of autism spectrum disorders, a comorbidity of epilepsy, is the Autism and Developmental Disabilities Monitoring (ADDM)
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From page 91... ...
Research is needed to develop appropriate criteria and screening methods and to assess the value of these records to further understanding about epilepsy when it is accompanied by cognitive comorbidities. International Surveillance with Records Linkage Several other countries, notably Denmark, Sweden, and Canada, have or are in the process of linking medical records across providers and administrative data from providers and payers for studies of epilepsy (Box 2-10)
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From page 92... ...
to improve understanding of the epidemiology and impact of 14 neurological conditions, including epilepsy. Its aims include using linked administrative, electronic health record, and survey data to study incidence and prevalence; comorbidities; the impact of epilepsy on affected people, fami lies, and society; health care services; and risk factors for the development of poor outcomes and other conditions.
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From page 93... ...
These data sources can provide only partial estimates of many basic surveillance indicators, including epilepsy incidence, prevalence, etiologies, risk factors, comorbidities, health status, quality of life, access to care, quality of care, and cost of care. Demographic information is often inadequate, and sample sizes are generally too small to examine disparities in population subgroups.
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:40-45. APCD (All-Payer Claims Database)
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http://www.epinet. co.nz/ (accessed February 22, 2011)
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Network publi cations. http://www.cdc.gov/ncbddd/autism/addm-articles.html (accessed November 22, 2011)
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PowerPoint presented at the IOM Workshop on Public Health Surveil lance, Population Health Research, and Data Collections for the Epilepsies, March 21. http://iom.edu/~/media/Files/Activity%20Files/Disease/Epilepsy/Panel%203-1%20 Cockburn.pdf (accessed November 18, 2011)
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2008. Exercise, diet, health behaviors, and risk factors among persons with epilepsy based on the California Health Interview Survey, 2005.
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http://pregnancyregistry.gsk. com/ (accessed February 7, 2012)
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2010a. Health information technology: Initial set of standards, implementation speci fications, and certification criteria for electronic health record technology; final rule.
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PowerPoint presented at the IOM Workshop on Public Health Surveillance, Population Health Research, and Data Collections for the Epilepsies, March 21. http://iom.edu/~/ media/Files/Activity%20Files/Disease/Epilepsy/Panel%202-3%20Jette.pdf (accessed Feb ruary 9, 2012)
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PowerPoint presented at the IOM Workshop on Public Health Surveillance, Population Health Research, and Data Collection for the Epilepsies, March 21. http:// iom.edu/~/media/Files/ActivityFiles/Disease/Epilepsy/Panel2-4Macleish.pdf (accessed Sep tember 19, 2011)
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2006. Malformation risks of antiepileptic drugs in pregnancy: A prospective study from the UK Epilepsy and Pregnancy Register.
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. North American AED Pregnancy Registry.
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1997. Maternal use of antiepileptic drugs and the risk of major congenital malformations: A joint European prospective study of human teratogenesis associated with maternal epilepsy.
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2005. Sudden unexpected death in epilepsy: A review of incidence and risk factors.
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From page 107... ...
PowerPoint presented at the IOM Workshop on Public Health Surveillance, Population Health Research, and Data Collections for the Epilep sies, March 21. http://iom.edu/~/media/Files/Activity%20Files/Disease/Epilepsy/Panel% 203-4%20Van%20Den%20Eeden.pdf (accessed November 22, 2011)
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