The following HTML text is provided to enhance online
readability. Many aspects of typography translate only awkwardly to HTML.
Please use the page image
as the authoritative form to ensure accuracy.
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
Below are the first 10 and last 10 pages of uncorrected machine-read text (when available) of this chapter, followed by the top 30 algorithmically extracted key phrases from the chapter as a whole. Intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text on the opening pages of each chapter.
Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.
Do not use for reproduction, copying, pasting, or reading; exclusively for search engines.
OCR for page 73
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
OCR for page 74
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
OCR for page 75
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
OCR for page 76
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
OCR for page 77
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;
OCR for page 78
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
OCR for page 79
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
OCR for page 80
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
OCR for page 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 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)
OCR for page 82
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
OCR for page 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 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
OCR for page 85
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
OCR for page 86
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
OCR for page 87
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
OCR for page 88
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
OCR for page 89
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
OCR for page 90
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
OCR for page 91
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)
OCR for page 92
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%
OCR for page 93
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
OCR for page 94
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
OCR for page 95
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
Items in cart [0]
