Describing Death in America What We Need to Know: Executive Summary (2003) / Chapter Skim
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Appendix A: Administrative Information for Relevant Datasets
Appendix A: Administrative Information for Relevant Datasets
Pages 73-95
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From page 73... ...
Appendix A Administrative Information for Relevant Datasets ADMINISTRATIVE INFORMATION dataset Health and Retirement Study abbrev HRS parent study first year 1992 last year 2000 sponsor NIA collector Institute for Social Research, University of Michigan PI Robert J Willis purpose to explain the antecedents and consequences of retire ment; to examine the relationship between health, in come, and wealth over time; to examine life cycle pat terns of wealth accumulation and consumption; to monitor work disability; and to examine how the mix and distribution of economic, family and program re sources affect key outcomes, including retirement, sav ings, health declines and institutionalization topics health and cognitive conditions, status; retirement plans and perspectives; attitudes, preferences, expectations, and subjective probabilities; family structure and trans 73
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From page 74... ...
74 DESCRIBING DEATH IN AMERICA ters; employment status and job history; job demands and requirements; disability, demographic background, housing, income and net worth, health insurance and pension plans design national panel study baseline in home, face-to-face in 1992 for the 1931-1941 birth co hort and in 1998 for newly added 1924-1930 and 1942 1947 birth cohorts followup follow-ups by telephone every second year, with proxy interviews after death design notes merged with AHEAD in 1998 sample 12,600 persons in 7,600 households % proxy sample notes 100% oversamples of Hispanics, Blacks, and Florida residents number of decedents questionnaire coding information bibliography available available links Employer Pension Study (1993, 1999~; National Death In dex, Social Security Administration availability publicly available data on www.umich.edu/~hrswww of data includes HRS Wave 1,2,3 (soon 4) contacts ADMINISTRATIVE INFORMATION dataset Longitudinal Study of Aging abbrev LSOA parent study National Health Interview Survey (NHIS)
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, 1988 (7,541) , 1990 (5,978~; LSOA II reinterviews were conducted in 1997 1998 and 1999-2000 design notes used personal interviews in 1984; telephone interviews and mailed questionnaires in 1986-1990; plus record link age sample 7,527 % proxy 8.5% sample notes the LSOA followed those participants in the Supplement on Aging (SOA)
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From page 76... ...
76 availability of data contacts ADMINISTRATIVE INFORMATION DESCRIBING DEATH IN AMERICA dataset National Mortality Followback Survey abbrev NMFS parent study first year 1961 last year 1993 sponsor National Center for Health Statistics collector NCHS PI purpose to supplement information from death certificates in the vital statistics file with information on important charac teristics of the decedent which affect mortality. Objec tives vary with each survey round topics include use of health services prior to death, socioeco nomic status, aspects of life style, health care utilization prior to death, and other factors that affect when and how death occurs; 1993 topics: demographics, SES, man ner of death, firearm related injury, motor vehicle/driv ing behavior, problem behaviors, use of alcohol, drugs, and tobacco, medical examiner/coroner abstract file design multicomponent stratified list-based survey baseline one time survey of next of kin, with linked data obtained from health care facilities used in the last year of life followup n/a design notes complexity of questionnaire necessitated telephone or in person interviews; 83% response rate; 1,000 items focused in 23 domains sample 22,957 % proxy 100% sample notes drawn from 1993 Current Mortality Sample (10% systematic random sample of death certificates)
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contacts Mortality Statistics Branch, NCHS, Hyattsville, MD (301~458-4666 ADMINISTRATIVE INFORMATION dataset National Health and Nutrition Examination abbrev NHANES parent study first year 1960 last year ongoing purpose topics sponsor NCHS collector NCHS PI Dr. Raynard Kington to assess the health and nutritional status of adults and children in the United States; to estimate disease prevalence, awareness, treatment and control; to monitor trends in risk behaviors; to study the relationship between diet, nutrition, and health; to establish a national probability sample of genetic material demographics, acculturation, SES and education; diet, dietary supplements, and food security; medical conditions, health care utilization, health insurance and prescription drugs used; physical activity, fitness and function; alcohol, drug, and tobacco use; pesticide use;
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From page 78... ...
questionnaire coding information bibliography available available links National Death Index, Medicare availability of data can be ordered from NCHS or downloaded from data Web (lag time there) contacts Raynard Kington, Director NHANES, NCHS, 6525 Belcrest Road, Room 1000, Hyattsville, MD 20782 ADMINISTRATIVE INFORMATION dataset Medical Expenditure Panel Survey abbrev MEPS parent study National Medical Care Expenditure Survey (NMCES or NMES)
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From page 79... ...
changed to begin phase in of overlapping panel; will evolve to be 4,000 households brought in each year and followed for 2 years (so 10,000 households in any 2 1/2 year frame) 10,000 households % proxy linked to NHIS PSU questionnaire coding information available available links linked to NHIS availability of PUPS on Web data contacts MEPSPD@ahrq.gov bibliography ADMINISTRATIVE INFORMATION dataset Panel Study of Income Dynamics abbrev PSID parent study first year 1968 last year 2001 sponsor NIA, NSF, DHHS/ASPE collector University of Michigan Institute for Social Research PI Sandra Hofferth and Frank Russell
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80 purpose DESCRIBING DEATH IN AMERICA to provide economic and demographic data at the family and individual level, as well as household topics income sources and amounts, employment, family com position changes, childbirth and marriage histories, and residential location; NIA funded supplement on health; some sociological and psychological data in some waves design every other year interview baseline followup design notes sample % proxy sample notes number of decedents Initial sample = 2,930 households and 1,872 low income families; households formed by earlier panel members are included in subsequent waves; 1996 sample = 8,885 then reduced by suspending some low income and added new post-1968 immigrant sample annual interviews conducted 1968-1997; every other year interviewing began 1999 long-term cumulative response rate was approximately 60% as of 1994 8,895 households in 1997 head of household interviewed questionnaire coding information available available links bibliography availability of main data files updated with each wave; data www.umich.edu/~psid contacts ADMINISTRATIVE INFORMATION dataset Outcome and Assessment Information Set abbrev OASIS parent study
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APPENDIX A 81 first year 2000 last year sponsor Center for Medicare and Medicaid Services collector agencies submit to CMS PI purpose form the core set of data items of a comprehensive assess ment of an adult home care patient and form the basis for measuring patient outcomes for purposes of quality im provement topics demographics, finances, current illness, therapies, living arrangements, physical assessments, symptoms, function design longitudinal baseline start of care assessment followup follow-up assessment design notes either incorporated into agency's data collection forms or can be stand alone data collection sample % proxy sample notes number of decedents questionnaire coding information available available links availability of data contacts bibliography ADMINISTRATIVE INFORMATION dataset Nursing Home Minimum Data Set (Resident) abbrev MDS parent study IOM Committee on Nursing Home Regulation first year 1990 last year ongoing sponsor CMS (formerly HCFA)
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82 collector each agency PI DESCRIBING DEATH IN AMERICA purpose to provide a comprehensive assessment of nursing home residents in a standardized format to transmit to HCFA topics demographics, customary routine, cognitive patterns, comunication, mood and behavior, physical functioning, continence, disease, nutrition, medications, procedures, therapy design longitudinal baseline on admission followup quarterly or with significant change in status design notes research indicates that staff can produce research-quality data, but in practice facilities differ in their commitment to ensuring that staff are trained and adhere to assessment protocols sample sample notes number of decedents % proxy all nursing home residents can be identified by discharge assessment questionnaire coding information available available links availability of data contacts ADMINISTRATIVE INFORMATION bibliography dataset Surveillance, Edpidemiology, and End Results Program abbrev SEER parent study first year 1973 last year ongoing sponsor National Cancer Institute
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APPENDIX A 83 collector PI purpose to provide information on cancer incidence and survival in the United States topics patient demographics, primary tumor site, morphology, stage at diagnosis, first course of treatment, and follow up for vital status design registry of all tumors reported in a geographic area baseline standard for case ascertainment is 98% followup design notes in additon to registry information, there is an ongoing program of special studies that collect information through surveys, interviews, record abstraction, and bio logical materials sample 14% of U.S. population % proxy sample notes geographic areas were selected for inclusion based on their ability to operate and maintain a high quality reporting system number of decedents questionnaire coding information available available links bibliography availability of updated annually and provided in print and electronic data formats contacts ADMINISTRATIVE INFORMATION dataset National Home and Hospice Care Survey abbrev NHHCS parent study National Health Care Survey first year 1992 last year 1998
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In 1996, 13,500 agencies provided services to 2,486,800 patients, with 8,168,900 discharges; in 1996, 1,800 agencies provided hospice care to 59,400 current patients and had 393,200 discharges (322,200 or 82% = deaths) 1996: 322,200 questionnaire coding information available available links can be linked to OASIS bibliography availability of public use data files available through 1998 data contacts Dr.
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From page 85... ...
APPENDIX A 85 first year 1973 last year 1999 sponsor NCHS collector PI purpose provide information on nursing homes from the perspec tive of the provider of services and from the recipient topics facilities: size, ownership, certification, occupancy rate, number of days of care provided, expenses; residents: demographic characteristics, health status, and services received design cross-sectional survey baseline 1973-1974, 1977, 1985, 1995, 1997, 1999; consist of facility files, discharge files, resident files, and staff files followup design notes data obtained through personal interviews with adminis trators and staff (note: information about residents pro vided by staff member familiar with care provided to resident) sample 1,500 facilities % proxy sample notes up to six current residents and up to six charges are selected for individual level interviews number of decedents questionnaire coding information available available links availability of public use data files data contacts bibliography ADMINISTRATIVE INFORMATION dataset National Hospital Discharge Survey National Health Care Survey parent study abbrev NHDS
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All hospitals with 1,000 or more beds are sampled with certainty. Non-certain hospitals selected randomly from PSU sampling units of NHIS number of i: decedents n 1996, deaths accounted for 3% of discharges questionnaire coding information available available links bibliography availability electronic files from FTP server of data contacts ADMINISTRATIVE INFORMATION dataset Healthcare Cost and Utilization Project abbrev HCUP parent study
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National Inpatient Sample = 1,000 hospitals number of decedents questionnaire coding information available available links availability of data contacts ADMINISTRATIVE INFORMATION bibliography dataset National Vital Statistics Death Certificates abbrev NVS parent study first year 1930 last year 1998 sponsor National Center for Health Statistics
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88 DESCRIBING DEATH IN AMERICA collector NCHS, CDC PI purpose to provide national mortality statistics topics immediate cause of death, intermediate cause of death, underlying cause of death, other coexisting conditions; age, race, marital status, educational attainment, occupa tion design baseline followup design notes sample 2.3 millionin 1998 % proxy continuous reporting by states to Bureau of Census sample notes number of decedents questionnaire coding information available available links availability of data contacts ADMINISTRATIVE INFORMATION bibliography dataset Medicare Claims abbrev Medicare parent study first year last year 1999 sponsor Health Care Financing Administration collector Westat PI purpose to track billing for health care services provided under the Medicare benefit to those eligible by age (65 years or older) , disability, or end stage renal disease topics age, gender, race, geographic region, utilization to in clude hospitalizations, hospice, services, stays in skilled
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From page 89... ...
APPENDIX A design continuous baseline followup design notes sample sample notes number of decedents 89 nursing facilities, outpatient, physician, and home health visits 41 million in 1998 % proxy approximately 1,700 decedents per year questionnaire coding information available available bibliography links linked to Social Security Administration records for purposes of capturing decedents availability of Medicare Continous History File is available on 5% of data beneficiaries each year contacts ADMINISTRATIVE INFORMATION dataset Medicare Current Beneficiary Survey parent study Medicare Claims first year 1991 last year 1998 sponsor HCFA abbrev MCBS collector Westat PI purpose determine expenditures and sources of payment for all health care services used by Medicare beneficiaries (in cluding noncovered services) and to trace changes in health status and spending over time topics use of health services, expenditures, insurance coverage, sources of payment, health status and functioning, and a variety of demographic and behavioral information, such as income, assets, living arrangements, family supports, and access to medical care
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From page 90... ...
The purpose of the Next of Kin Survey on decedents is to estimate the total long-term care costs and the extent of spend-down to qualify for Medicaid
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This process was repeated in 1989,1994, and 1999 design notes Overall response rates ranged from 97.1% in 1982 to 95.4% in 1989; informal care supplement in 1982, 1989, 1999; next of kin decedents 1994; nursing home resident follow-back 1989; nutritional status 1994 sample 36,000 % proxy 23% 1984;20% 1989 sample notes 55,000 screen interviews; 21,000 community detailed in terviews, and 5,000 detailed institutional interviews in total for the 1982-1993 surveys; 1982: Medicare HISKEW file stratified geographically into LTC Primary Sampling Units, which were grouped into 173 long term care strata; one LTC PSU selected from each stratum number of 17,000 deaths identified from Medicare admin records decedents (1982-1996~: Next of Kin Supplement questionnaire coding information bibliography available available links linked to Medicare Part A and B most years; Medicare mortality records
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From page 92... ...
The three major objects are to study morbidity and mortality associated with suspected risk factors, changes over time in participant characteristics, and the natural history of chronic disease and functional impairments topics self-reported medical conditions, activities of daily liv ing, health and nutrition habits and weight, physical ex aminations, laboratory tests, facility medical records, death certificates design longitudinal follow up to a multistage, stratified sample baseline NHANES I data (1971-1975) included subsample that re ceived detailed study and an augmentation survey 1974 1975.
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of 1,392 decedents questionnaire coding information bibliography available available links a study ID number links any NHANES files availability of Mortality Data tape includes death certificate info on all data decedents contacts ADMINISTRATIVE INFORMATION dataset National Health Interview Survey abbrev NHIS parent study first year 1957 last year 2000 sponsor NCHS collector U.S. Bureau of the Census PI purpose to produce statistics on disease, injury, impairment, dis ability, and related health topics on a uniform basis for the nation topics design cross sectional (area based household survey)
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; linked to National Death Index questionnaire coding information bibliography available available links National Death Index system beginning survey year 1986; vital status known through 1997 availability of Public use files on NCHS Website data contacts ADMINISTRATIVE INFORMATION dataset Asset and Health Dynamics of the Oldest Old abbrev AHEAD parent study first year 1993 last year sponsor collector PI purpose to provide an understanding of the implications of health dynamics in old age for transtitions in economic well
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. Wave 2 interviews were conducted with 7,039 of the 8,222 Wave I respondents and approximately 775 exit interviews with next of kin; multistage sample plan, with oversampling of Blacks, Hispanics, and Florida residents; dual sampliing frame using 81 of the 93 PSUs in HRS, then deleting half and replacing with selections from the HCFA-EDB file; compared to census files, the sample reflected population except for females aged 80 and over (more likely to be in nursing homes)
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