Describing Death in America What We Need to Know: Executive Summary (2003) / Chapter Skim
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3. Currently Available Datasets
3. Currently Available Datasets
Pages 28-52
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From page 28... ...
datasets traditionally used to describe dying; (2) Census Bureau surveys; (3)
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was developed through a collaborative effort between the National Center for Health Statistics and the states. Although there is no formal agreement to use this standard certificate, the National Center for Health Statistics has an agreement with the states through the Vital Statistics Cooperative Program to provide data in specified formats consistent with the standard certificate.
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30 DESCRIBING DEATH IN AMERICA TABLE 3-1 Types of Data Available from Datasets That Contain Individual-Level Information Number Pain or other Data of deaths Cause physical Phys~cal type year[s] of death Comorbidities symptoms function AHEAD C1 MCBS B 1,900 (1993-98)
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CURRENTLY AVAILABLE DATASETS 3 ical Physical Psychological Site of Lived Social atoms function symptoms QoL Cognition death with support
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; AHEAD Asset and Health Dynamics Among the Oldest Old; LSOA Longitudinal Survey of Aging; MCBS Medicare Current Beneficiary Survey; MDS nursing home Minimum Data Set; MEPS Medicare Expenditure Panel Survey; NDI National Death Index; NHANES National Health and Nutrition Examination Survey; NHEFS NHANES I Epidemiologic Followup Survey; NHHCS National Home and Hospice Care Survey; NHIS National Health Interview Survey; NLTCS National eluding the use of electronic records. The use of death certificate information will be greatly facilitated as the National Center for Health Statistics works in collaboration with the states to build a totally electronic infrastructure to collect and manage these data.
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National Death Index (NDI) The NDI is a central computerized index of death certificate information that was established as a resource for epidemiologists and other health researchers to determine if persons in their studies have died.
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Other significant cone lions contributing to death but not resulting in the underlying cause given in Part 1.
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The Current Population Surveys include only individuals age 16 and older, so no children are represented in the dataset linked to the National Death Index.
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The current lack of detail about the specific services or medications received during that care within Medicare claims data hampers the ability to evaluate the quality of that care. Minor increases in the data elements on these claims forms would provide a means to evaluate the content of care and begin to assess quality.
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The data are designed to support both cross-sectional and longitudinal analyses and can be linked to Medicare claims data. The first round of interviews was conducted in 1991, and the survey has been in the field continuously since then.
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For example, beginning with the survey year 1986, the National Center for Health Statistics collected linkage information on all respondents to the National Health Interview Survey (NHIS) , described
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National Health and Nutrition Examination Survey (NHANES) The NHANES now uses the NHIS as its sampling frame and has links to Medicare and the National Death Index records that permit longitudinal and historical studies of disease.
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civilian non-institutionalized population, as well as a national survey of nursing homes and their residents. MEPS is the third in a series of national probability surveys about the financing and utilization of medical care in the United States.
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The LSOA II sample has yet to be matched to National Death Index records, but by the final wave of interviewing, 1,900 persons were reported deceased (Weeks, 2001~.
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The original AHEAD study sample consisted of 7,447 HRS respondents aged 70+. AHEAD data provide information on the costs of illness borne by the family and the effectiveness of varying care arrangements in preserving function and delaying institutionalization.
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The questionnaire information on out-of-pocket medical expenditures and the long time-series of core PSID information are being linked to Medicare claims data, and should result in a valuable data set. DISEASE REGISTRIES AND SURVEILLANCE STUDIES Disease registries provide targeted information about those with specific health conditions.
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SEER data have been linked to the National Death Index and Medicare claims data, but the potential for other linkages exists. REIMBURSEMENT-SPECIFIC ADMINISTRATIVE DATABASES Although the use of data from the Medicare program was described earlier, there are other major sources of administrative data linked to reimbursement systems.
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The NHCS builds upon and now includes the National Hospital Discharge Survey, the National Ambulatory Medical Care Survey, the National Nursing Home Survey, and the National Health Provider Inventory. National Home and Hospice Care Survey (NHHCS)
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National Hospital Discharge Survey (NHDS) The NHDS, conducted annually since 1965, collects data from a sample of approximately 270,000 inpatient records acquired from a national sample of about 500 hospitals.
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In 1990, the Health Care Financing Administration (now known as the Centers for Medicare and Medicaid Services, or CMS) published a Resident Assessment Instrument (RA p and specified that assessments would be conducted on each Medicaid certified nursing home resident upon admission, upon "significant change" in status, and at least annually after admission or significant change.
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ICAHO is striving to make core measures for home care and long-term care organizations as consistent as possible with the CMS requirements for OASIS and the nursing home MDS. The ORYX initiative should prove to be a useful source of detailed information about care provided for select conditions relevant to the end of life, but until a significant amount of data become available, its value will not be known.
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Data can be readily summarized and analyzed from public-use datasets about mortality, cancer incidence, hospital discharges, AIDS, behavioral risk factors, diabetes and many other topics. The National Center for Health Statistics also maintains the Statistical Export and Tabulation System (SETS)
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The recent increase in inclusion of information about pain in record keeping by hospitals, home health agencies, hospices and nursing homes data systems will provide an opportunity to better monitor progress towards reducing pain at the end of life. By allowing us to track the aggregate responses to these questions over time, future data from sources such
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No questions surveying patients or loved ones about the degree to which they felt adequately informed were identified. · Question #10: Are patients and loved ones receiving supportive services from chaplains, therapists, health aides, and other providers?
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· Question #12: Are loved ones supported through the grieving process? No population-based information appears to be available about the availability or utilization of bereavement services.
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