Epilepsy Across the Spectrum Promoting Health and Understanding (2012) / Chapter Skim
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Appendix B: IOM Data-Gathering Effort
Appendix B: IOM Data-Gathering Effort
Pages 461-508
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From page 461... ...
and one state records linkage system (South Carolina) gather data in response to a list of surveillance questions for their populations and analyze the strengths and limitations of their systems in generating information about epilepsy.
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Health Care Services: • For those with psychiatric comorbid conditions (e.g., depression, anxiety, bipolar disorder, schizophrenia/psychosis) , how many are receiving treatment for those conditions?
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codes and algorithms to identify epilepsy cases, health care service use, and comorbidities: • Incident epilepsy: A single medical encounter with an ICD-9 code of 345.xx in the absence of a prior 345.xx code in the medical re cord or two or more medical encounters on separate days each with an ICD-9 code of 780.39 in the absence of a prior 780.39 code or 345.xx code in the medical record or a single medical encounter with an ICD-9 code of 780.39 and a seizure medication prescribed for outpatient use for 3 or more months without a prior 780.39 code or 345.xx code. • Prevalent epilepsy: A single medical encounter with an ICD-9 code of 345.xx or two or more medical encounters on separate days each with an ICD-9 code of 780.39 or a single medical encounter with an ICD-9 code of 780.39 and a seizure medication prescribed for outpatient use for 3 or more months.
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Autism -- 299.x Other Chronic Disease –410-414 (ischemic heart disease) –401-405 (hypertensive heart disease)
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Marianna Spanaki-Varelas, M.D., Ph.D. Aida Li Organizational Context The Henry Ford Health System is a large, vertically integrated system with 6 hospitals, a 1,000-member multispecialty group practice, more than 2,000 other affiliated private practice physicians, more than 30 ambulatory care centers, a 500,000-member managed care plan, free-standing emergency rooms, and many other components or "business units." The Henry Ford Comprehensive Epilepsy Program at Henry Ford Hospital (HFH)
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From page 466... ...
Using the HFHS Corporate Data Store (an administrative database with data on all inpatient and outpatient care in the HFH and HFMG used for a combination of financial analysis, quality improvement, and research purposes) , we identified all individuals with one or more encounters with a primary or secondary diagnostic code of epilepsy or seizure.1 For all of these individuals, we conducted a "look-back" search in records of prior years (potentially as far back as 1995 for patients whose records went back that far)
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Patient Demographics Patient age, gender, and race or ethnicity were available as standard data elements in the Corporate Data Store. Patient age was recorded in the year in which he or she was identified as either an incident or a prevalent case (HAP-HFMG cohort)
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Current Procedural Terminology (CPT) and ICD-9 procedure codes were used to identify epilepsy surgeries and services in the inpatient Epilepsy Monitoring Unit (EMU)
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. We believe that the difference between the prevalence estimate based on single-year data and the estimate based on 5-year data reflects the fact that many patients with stable, well-controlled epilepsy are seen at intervals greater than one year, so they appear in the numerator once or twice in the data set in a 5-year period, but do not appear in each individual year, even though they are consistently in the denominator population.
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Medical Record Review Of the 100 cases selected for full medical record review, 72 were confirmed as having epilepsy, either through text in physician notes or text from EEG or EMU reports; 6 of the remaining 28 had possible epilepsy, but the diagnosis either was not confirmed by EEG testing (e.g., patient was seen in the ED several times and did not return for EEG evaluation) or was in some other way ambiguous.
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This rate is, however, higher than that reported nationally. Our higher rate probably reflects the presence of a well-respected epilepsy surgery program in the medical group and the potential for health plan members who might be candidates for surgery to elect the HFMG network and thereby enter both numerator and denominator of the surgery rate.
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As a general policy, the vast majority of the EMU admissions are for incident cases, but it was not possible for us to clearly identify incident versus prevalent cases in the larger sample of patients, many of whom had a first point of contact at Henry Ford for a specialty consult but had some previous epilepsy care elsewhere. There were 68 surgeries for epilepsy in this group.
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From page 473... ...
The fact that administrative data gave much lower estimates for anti-epileptic medication use than the medical record review is interesting -- in addition to the possibility of drugs being paid for through a spouse's insurance or other means, we also note that many patients take advantage of "$4 generic" programs at some retail pharmacy outlets and would not then have pharmacy claims recorded in our databases. Although some neurologists in the neurology department of the HFMG specialize in epilepsy, this is not an official designation, and we were not able to formally distinguish between "epileptologists" and "other neurologists" in our analysis of practice patterns.
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Understanding patterns of care, then, is possible in a system such as Henry Ford that has health plan, hospital, primary care, and specialty care components that do not completely overlap, but is perhaps more challenging than in more completely self-contained systems with well-defined denominator populations, such as Kaiser. GEISINGER HEALTH SYSTEM'S DATA ON HEALTH CARE SERVICES FOR PATIENTS WITH EPILEPSY Matthew A
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For estimation of the incidence of epilepsy, records were reviewed for the entire study period January 1, 2004, to June 30, 2011. A new diagnosis of epilepsy was considered established if the above definition of prevalent epilepsy was newly met in a record not previously containing such codes, with the additional requirement that the subjects' record contain documentation of GHS PCP care establishment at least 2 years prior to the new appearance of the epilepsy-related codes.
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Incidence and Prevalence Prevalence Of 421,174 patient records with an associated GHS PCP in the study year (7/1/2010-6/30/2011) , 4,293 met prevalent case definitions, resulting in a one-year period prevalence of 10.2 cases per 1,000 patients.
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This appears to be a moderate underestimate on multiple grounds: 1. The case duration provided by dividing our prevalence estimate of 0.0102 cases by incidence of 0.000208 cases per year = 49 years.
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Health Care Services The database was queried for medication orders in the psychoactive and anticonvulsant classes, for types (ED, outpatient, inpatient) and numbers of patient care encounters -- including whether with a neurological practitioner -- and for numbers of cases in which specific epilepsy evaluation
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, compared with 3.7 percent of primary care comparators (2.6 services) ; fully 78.5 percent of prevalent patients had outpatient visits anywhere in the system (7.8 services)
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many of our own patients had diagnostic EEGs and MRIs within the system performed well before the period of the study, and we presume this applies to the prevalent population as a whole; and (3) procedure rates especially appear suboptimally accurate (see discussion of neurosurgery below)
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. The data sets that are most commonly used include the VHA annual medical SAS data sets for VA inpatient and outpatient care, VA pharmacy data, VHA extended care, VA inpatient short stay (< 24 hours)
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Our surveillance of epilepsy within the VA contains inpatient, outpatient, and pharmacy data that are linked using an encrypted patient identifier. These databases include diagnosis codes, dates of care, clinic or hospital ward in which care was received, facility in which care was received, specific medications received, the dose of each medication, and the number of days that medication was received.
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A final limitation with regard to examining prevalence and incidence by race or ethnicity is that although the data are quite accurate when available, race data were missing for approximately 22 percent of older veterans and 19 percent of OEF-OIF veterans. The first estimates are based on the geriatric VA patient population in FY 2006 who received care in FY 2005 and FY 2006 (N = 2,023,477)
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Further research will be required to determine the most appropriate algorithm for this new population of veterans. For the purposes of this report, comorbidities, treatment, and health care utilization are based on the definition of epilepsy using all seizure medications since the pattern of findings is essentially the same using both definitions.
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ICD-9-CM codes from the Australasian Rehabilitation Outcomes Centre and the Department of Defense were used to identify TBI-related diagnoses. Strengths and Limitations The strength of this approach in linking epilepsy with comorbidities is that the integration of inpatient, outpatient, and pharmacy data in this system allows ready identification of chronic comorbid conditions in large numbers of individuals relatively quickly.
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Health Care Services Methods We identified the seizure medications, antidepressants, and antipsychotic medications received by each individual using VA pharmacy data
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Finally, individuals who received hospital care for epilepsy would be evaluated by a neurologist as an inpatient; therefore our assessment of neurology care may be underestimated. Treatment of Comorbid Conditions In the geriatric cohort, we found that among those with any mental health diagnosis 57 percent of prevalent cases and 58 percent of incident cases received a prescription of a psychotropic medication.
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From page 488... ...
Restricting analyses to those with any psychosis, we found that 56 percent of prevalent cases and 57 percent of incident cases received an antipsychotic. Treatment in Specialty Care Our examination of the type of care received by veterans in the geriatric epilepsy cohort indicated that for prevalent cases, 23 percent had at least one visit with a neurologist in FY 2005 and 21 percent received neurology care in FY 2006.
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. Similarly, the year before meeting epilepsy criteria, 32 percent received emergency care, while the year of meeting epilepsy criteria, 48 percent had at least one emergency visit (19 percent > 1 visit FY 2006)
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, with an increase to 30 percent (mean hospital days 6.8, SD = 23) in the year of meeting epilepsy criteria.
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Selassie, Dr.P.H.4,5 Overview The South Carolina Epilepsy Surveillance System (SCESS) was established in response to funding announcement from the National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP)
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• Public Epilepsy Foundation of SC FIGURE B-1 Systems involved in epilepsy and seizure disorder surveillance in South Carolina. NOTE: CDC-NCCDPHP = Centers for Disease Control and Prevention's National Center for Chronic Disease Prevention and Health Promotion; CMS = Centers for Medicare and Medicaid Services; CPT = Current Procedural Terminology; DHEC = Department of Health and Environmental Control; ED = emergency department; ICD-9-CM = International Classification of Diseases, Ninth Revision, Clinical Modification; MUSC = Medical University of South Carolina; SC = South Carolina.
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and addresses for each encounter greatly increases the potential benefits of these data sources for data linkage, medical record review, and follow-up of patients. The variables included in the UB-04 data set are described elsewhere (South Carolina Budget and Control Board Office of Research and Demographics, 2012)
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These include clinical services rendered in physician offices, nursing homes, and long-term care facilities. Th ORS receives copies of patient billing extracted data on all items included in the CMS-1500 form, which are collated into the various venues of patient care as physician office visits, nursing home care, et cetera.
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The outpatient physician office visit data along with the pharmacy data will provide a mechanism for identifying patients with epilepsy. The detailed data elements for these files are compiled into a Medicare Data Dictionary.
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collated in UB, SHP, and Medicaid files on a biannual basis. The latter two files include noninstitutional claims on patient encounters rendered in physician offices, nursing homes, and long-term care facilities.
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If they grant their consent to participate in the study, the ORS releases their personal information to the research team, including access to their medical records. In summary, the key factors that enable tracking and follow-up
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. NOTE: CPT = Current Procedural Terminology.
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Currently, 15 years of person-specific data are available on epilepsy and seizure disorders, making the system among the best sources of epilepsy data for epidemiological analysis. Fourth, the data system includes UIDs that allow linkage across multiple data platforms for service delivery, clinical research, and outcome studies.
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and acute care charges. CPT codes provide substantiating information on VNS implant, epilepsy surgery, genetic testing for epilepsy, and EEG monitoring to validate the diagnosis codes of epilepsy among persons coded with 789.03.
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The most profound difference in incidence was noted among the insurance categories. Medicaid-insured individuals had 26-fold increased risk of new onset of epilepsy compared to those with private insurance (0.398 percent per year for Medicaid and 0.015 percent per year for private)
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Prevalence estimates also show the disproportionate burden of epilepsy borne by persons with Medicaid insurance (1.059 percent)
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. Description of Comorbidities Among Incident Cases Of incident cases, 16.2 percent have comorbid conditions.
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surgeons as "neurosurgery"; evaluations made by neuropsychiatrists and psychiatrists as "psychiatric care." Evaluations made by family physician, internist, pediatrician, emergency medicine, and general practitioner were listed as "primary care." All other consults and evaluations made by various specialties, including radiologist, nurse practitioner, psychologist, neuropsychologist, et cetera, were grouped as "all other care." Receipt of care for psychiatric problems was determined by the specialist rendering the service or by referral disposition to mental health clinics, which when flagged indicated that the service was received. Venues of care were grouped as inpatient, hospital outpatient, or ED; physician offices; and ambulatory care services.
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Data from chart reviews of randomly selected 2,226 people with epilepsy showed that 70.5 percent were only on monotherapy; 24.2 percent were on two medications; and 5.3 percent were on three or more seizure medications. The most commonly prescribed seizure medications were phenytoin (55 percent)
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Detailed information on annual rates of use and costs of hospital care, ED care, and physician services in a given year; average number of services per setting; cost of seizure medications; and comparison to non-epilepsy population were not available. Furthermore, it is not possible to partition services by prevalence and incidence status until supplementary data elements are acquired from the sources.
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It will be important that there be unique identifiers to link files across multiple data platforms to unduplicate observations and discriminate incident and prevalent cases. Access to medical charts for periodic evaluations of positive predictive value, sensitivity, and accuracy of the case ascertainment criteria is of paramount importance.
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:2522-2529. South Carolina Budget and Control Board Office of Research and Demographics.
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