Appendix A
Administrative Information for Relevant Datasets

ADMINISTRATIVE INFORMATION

dataset parent study

Health and Retirement Study

abbrev HRS

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 retirement; to examine the relationship between health, income, and wealth over time; to examine life cycle patterns of wealth accumulation and consumption; to monitor work disability; and to examine how the mix and distribution of economic, family and program resources affect key outcomes, including retirement, savings, health declines and institutionalization

topics

health and cognitive conditions, status; retirement plans and perspectives; attitudes, preferences, expectations, and subjective probabilities; family structure and trans



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Appendix A Administrative Information for Relevant Datasets ADMINISTRATIVE INFORMATION dataset parent study Health and Retirement Study abbrev HRS 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 retirement; to examine the relationship between health, income, and wealth over time; to examine life cycle patterns of wealth accumulation and consumption; to monitor work disability; and to examine how the mix and distribution of economic, family and program resources affect key outcomes, including retirement, savings, health declines and institutionalization topics health and cognitive conditions, status; retirement plans and perspectives; attitudes, preferences, expectations, and subjective probabilities; family structure and trans

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  fers; 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 cohort 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 available coding information available bibliography links Employer Pension Study (1993, 1999); National Death Index, Social Security Administration availability of data publicly available data on www.umich.edu/~hrswww 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) 1984 Supplement on Aging first year 1984 last year 1990     sponsor

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collector PI purpose to measure transitions in functional status and living arrangements for a national representative cohort of Americans who were aged 70 and older in 1984 and lived in the community; a second survey was field on a cohort derived from the 1994 NHIS topics functioning, family structure, housing and living arrangements, health care, economic and retirement indicators, vital status design longitudinal panel baseline 1984 baseline personal interviews called the Supplement on Aging (SOA) were conducted with 16,148 subjects; The LSOA followed 7,527 of these subjects who were 70+ followup LSOA reinterviews in 1986 (5,151), 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 linkage sample 7,527 % proxy 8.5% sample notes the LSOA followed those participants in the Supplement on Aging (SOA) to the 1984 NHIS who were 70 years of age and over. The SOA was a systematic one-half sample of people 55-64 in the 1984 NHIS and all people 65+; In 1986, the LSOA interviewed all SOA households with participants 80+; all households with Hispanic or black persons and their relatives 70-79; and half of households with whites aged 70-79. In 1988 and 1990, all participants; The LSOA II used the same methodology number of decedents   questionnaire available coding information available bibliography links National Death Index and Medicare administrative records

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availability of data contacts ADMINISTRATIVE INFORMATION 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 characteristics of the decedent which affect mortality. Objectives vary with each survey round topics include use of health services prior to death, socioeconomic 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, manner of death, firearm related injury, motor vehicle/driving 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): sampling strata: age, race, gender, and cause of death; 45% of sample se

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  lected with certainty; oversampling of blacks, females, decedents under age 35 and over age 99 (South Dakota declined to participate) number of decedents 22,957 questionnaire available coding information available bibliography links   availability of data data tapes can be purchased through NTIS: four linked data files (death certificate file; proxy respondent survey questionnaire; nursing home, hospital, and hospice questionnaire; and facility abstract record) 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 sponsor NCHS   collector NCHS PI Dr. Raynard Kington purpose 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 topics 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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  includes medical examination and special substudy collecting hair design annual survey baseline “snapshot” only, but now linked to Medicare and NDI for longitudinal and historical purposes followup linked to the NDI and Medicare design notes now linked to the NHIS at the Primary Sampling Unit (PSU); linked to NHIS with regard to questionnaire content; household screening interview; detailed household interview, individual physical exam and health and dietary interviews in mobile examination centers (or at home if necessary) sample approx 6,000 per year (5,000 with PE) % proxy sample notes now each year’s data are representative number of decedents link to NDI; passive mortality study 1976-1980; cohort followup study (NHEFS) questionnaire available coding information available bibliography links National Death Index, Medicare availability of data data can be ordered from NCHS or downloaded from 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) first year 1977 last year ongoing sponsor AHRQ & NCHS collector PI

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purpose provide comprehensive data that estimate the level and distribution of health care use and expenditures, monitor the dynamics of the health care delivery and insurance systems, and assess health care policy implications topics health care use, expenditures, sources of payment, insurance coverage, health care status, and disability design overlapping panel design baseline followup design notes First two surveys (1977 and 1987) were studies of 14,500 households; 1996 (n = 10,000 households) 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) sample 10,000 households % proxy sample notes linked to NHIS PSU number of decedents   questionnaire available coding information available bibliography links linked to NHIS availability of data PUFS on Web contacts MEPSPD@ahrq.gov 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 Sandra Hofferth and Frank Russell     PI    

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purpose to provide economic and demographic data at the family and individual level, as well as household topics income sources and amounts, employment, family composition 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 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 followup annual interviews conducted 1968-1997; every other year interviewing began 1999 design notes long-term cumulative response rate was approximately 60% as of 1994 sample % proxy 8,895 households in 1997 head of household interviewed sample notes number of decedents   questionnaire available coding information available bibliography links   availability of data main data files updated with each wave; www.umich.edu/~psid contacts   ADMINISTRATIVE INFORMATION dataset Outcome and Assessment Information Set abbrev OASIS parent study  

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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 assessment of an adult home care patient and form the basis for measuring patient outcomes for purposes of quality improvement 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 available coding information available bibliography links   availability of data contacts 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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collector each agency PI 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 % proxy sample notes all nursing home residents number of decedents can be identified by discharge assessment questionnaire available coding information available bibliography links availability of data contacts ADMINISTRATIVE INFORMATION 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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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 biological 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 available coding information available bibliography links availability of data updated annually and provided in print and electronic 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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first year 1973 last year 1999 sponsor NCHS collector PI purpose provide information on nursing homes from the perspective 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 administrators and staff (note: information about residents provided 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 available coding information available bibliography links   availability of data public use data files contacts   ADMINISTRATIVE INFORMATION dataset National Hospital Discharge Survey abbrev NHDS parent study National Health Care Survey

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first year 1965 last year annually   sponsor NCHS collector PI purpose provide information on the characteristics of inpatients discharged from non-federal short-stay hospitals topics age, sex, race, ethnicity, marital status, expected sources of payment, admission and discharge dates, discharge status design   baseline   followup   design notes note: cannot use individual level data because individuals could have multiple discharges in one year and thus be sampled more than once. sample 500 hospitals and 270,000 inpatient beds % proxy sample notes Excludes federal, military, VA, prison hospitals, and hospitals with fewer than six beds. 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 decedents in 1996, deaths accounted for 3% of discharges questionnaire available coding information available bibliography   links   availability of data electronic files from FTP server contacts   ADMINISTRATIVE INFORMATION dataset Healthcare Cost and Utilization Project abbrev HCUP parent study   first year 1988 last year

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sponsor Agency for Healthcare Research and Quality collector PI purpose to build a multi-state health care data system about discharges from hospital topics primary and secondary diagnoses, primary and secondary procedures, admission and discharge status, demographics, expected payment source, total charges, length of stay design coordinated all payer databases baseline   followup   design notes   sample 7 million hospital stays % proxy sample notes 22 states participate, approximating a 20% stratified sample of U.S. community hospitals. National Inpatient Sample = 1,000 hospitals number of decedents   questionnaire available coding information available bibliography links   availability of data   contacts   ADMINISTRATIVE INFORMATION dataset National Vital Statistics Death Certificates abbrev NVS parent study   first year 1930 last year 1998 sponsor National Center for Health Statistics collector NCHS, CDC PI

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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, occupation design continuous reporting by states to Bureau of Census baseline   followup   design notes   sample 2.3 million in 1998 % proxy sample notes   number of decedents   questionnaire available coding information available bibliography links   availability of data   contacts   ADMINISTRATIVE INFORMATION 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 include hospitalizations, hospice, services, stays in skilled nursing facilities, outpatient, physician, and home health visits

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design continuous baseline   followup design notes sample 41 million in 1998 % proxy sample notes   number of decedents approximately 1,700 decedents per year questionnaire available coding information available bibliography links linked to Social Security Administration records for purposes of capturing decedents availability of data Medicare Continous History File is available on 5% of beneficiaries each year contacts   ADMINISTRATIVE INFORMATION dataset Medicare Current Beneficiary Survey abbrev MCBS parent study Medicare Claims first year 1991 last year 1998   sponsor HCFA collector Westat PI     purpose determine expenditures and sources of payment for all health care services used by Medicare beneficiaries (including 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 design four-year rotating panel baseline 6,000 new beneficiaires are added each year

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followup interviewed every four months design notes originally not a rotating panel, but problems with follow up sample 12,000 % proxy   sample notes 107 primary geographic sampling units, with oversampling in areas with high growth in population of elders number of decedents 700 per year questionnaire available coding information available bibliography links Medicare claims and administrative data (in turn linked to Social Security Administration) availability of data purchased through HCFA contacts Director, Enterprises Databases Group, Office of Information and Systems, HCFA, 7500 Security Boulevard, Baltimore, MD 21244-1850; 410-786-3690 ADMINISTRATIVE INFORMATION dataset National Long Term Care Survey abbrev NLTCS parent study companion to the National Long-Term Care Channeling Demonstration (DHHS) first year 1982 last year 1999   sponsor Office of the Assistant Secretary for Planning and Evaluation (ASPE) collector PI Census administered; Duke University Kenneth Manton purpose to learn more about health, functioning, and social and economic factors among community-based disabled. 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 topics prevalence and patterns of functional limitations, both physical and cognitive; medical conditions and recent medical problems; use of health care services; kinds and

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  amounts of formal and informal long-term care services used; demographic characteristics; public and private expenditures for health care services; and housing and neighborhood characteristics design list-based, longitudinal, panel design baseline In 1982, a random sample of 35,008 Medicare-eligible people >65 yr were screened for disability, yielding 6,393 chronically disabled community residents who qualified for in-person interviews. 1,925 interviews were completed with informal caregivers of disabled elders (of 2,349 identified) followup In 1984, all survivors were contacted to be reinterviewed. In addition, a sample of community residents who were not disabled in 1982 was added and a new sample of people who reached 65 years of age between 1982 and 1984 was added. 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 interviews, 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 decedents 17,000 deaths identified from Medicare admin records (1982-1996): Next of Kin Supplement questionnaire available coding information available bibliography links linked to Medicare Part A and B most years; Medicare mortality records availability of data public use files available from Duke University (http://cds.duke.edu)

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contacts Richard Suzman at NIA; William Marton at DALTCPT (wmarton@osaspe.dhhs.gov) ADMINISTRATIVE INFORMATION dataset National Health and Nutrition Examination NHFES abbrev parent study NHANES I first year 1971 last year 1992   sponsor NCHS/NIA collector PI purpose to investigate the association between factors measured at baseline and the development of specific health conditions. 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 living, health and nutrition habits and weight, physical examinations, 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 received detailed study and an augmentation survey 1974-1975. followup In 1982-1984, interviews were conducted with subject or proxy for 84.8% of the eligible 14,407 cohort (11,361 alive, 2,022 deceased, 1,024 not traced); in 1986, those over 55 years old (n = 3,980) included 3,132 alive, 635 dead, and 213 not traced. In 1987, all ages cohort = 11,750 with 10,463 alive, 555 dead, and 732 not traced. In 1992, n = 11,195, with 8,687 still alive, 1,392 dead, 1,116 not traced. Interviews in 1982-1984 were conducted in person; remaining years by phone with no physical assessment design notes four follow up waves: 1982, 1986, 1987, and 1992 sample 14,407 % proxy 1982-1984:7.4%  

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sample notes 12,220 (84.8%) interviewed (or 91.3% of those traced); the NHANES I adults (25-74) civilian noninstitutionalized population who completed a medical examination; included oversampling of persons living in poverty areas, women of childbearing age, and elderly (65+); a subsample of 6,913 were examined in greater depth and asked additional questions; an augmentation survey was conducted in 1974-1975 number of decedents 4,604 decedents: death certificates for 98%; interviews in 1992 with 1,130 (81.2%) of 1,392 decedents questionnaire available coding information available bibliography links a study ID number links any NHANES files availability of data Mortality Data tape includes death certificate info on all 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, disability, and related health topics on a uniform basis for the nation topics   design cross sectional (area based household survey) baseline About 40,000 households are interviewed in person each year (800 representative households selected each week to avoid seasonal bias), representing over 100,000 people Responsible adult interviewed and asked about household members; core set of questions plus varying supplemental questions

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followup   design notes substantially redesigned in 1997; changes to capture outpatient surgery, services provided by other than MD providers; mental health services; improvements in measuring health status; symptoms instead of naming conditions; family-level data sample 100,000 each year % proxy sample notes area-based households; U.S. civilian, noninstitutionalized population; response rates 94.9% to 96.7%; coordinated with other Census surveys to avoid double survey of same household; Westat, Inc., studied sampling options for 1995 redesign number of decedents 32,431 decedents 1986-1994 (10,407 died within two years of interview); linked to National Death Index questionnaire available coding information available bibliography links National Death Index system beginning survey year 1986; vital status known through 1997 availability of data Public use files on NCHS Website 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-being, changes in family and martial status, and for reliance on public and private support systems topics demographic info; health, cognition, family structure and transfers, use and cost of health services, job status, in

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  come, net worth, subjective expectations, and insurance; these included physical tasks and personal care activities design   baseline Wave 1 conducted in 1993; response rate of 80%; those 70-79 were generally interviewed by telephone; those 80+ were generally interviewed in person followup Wave 2 took place in 1995 and 1996; reinterview rate of 95%; combined HRS/AHEAD in 1998 design notes   sample 8,222 % proxy avg 10.4% (increases with age; more men) sample notes initially noninstitutionalized persons born in 1923 or earlier (aged 70 years or older); Wave 1 = 8,222 respondents (and spouses). 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) number of decedents 775 from Wave 1 questionnaire available coding information available bibliography links Medicare (80% gave permission); Medicaid (fewer gave permission) availability of data contacts