National Academies Press: OpenBook

Describing Death in America: What We Need to Know: Executive Summary (2003)

Chapter: Appendix A: Administrative Information for Relevant Datasets

« Previous: References
Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

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

Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

 

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

Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

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

Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

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

Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

 

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;

Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

 

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

Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

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

 

 

Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

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

 

Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

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)

Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

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

Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

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

Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

sponsor

NCHS

collector

PI

purpose

to document the availability and utilization of home and hospice care

topics

agency characteristics: ownership, affiliation, geographic region, location, certification status; Patient characteristics: age, race, marital status, living arrangements, caregiver status, services received, service providers, reason for discharge

design

cross-sectional survey

baseline

 

followup

design notes

data collected through personal interviews with administrators and staff

sample

16,500 agencies (1998)

% proxy

sample notes

Stratified, two stage probability design (agency type, MSA, region, ownership, certification) 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)

number of decedents

1996:322,200

questionnaire available

coding information available

bibliography

links

can be linked to OASIS

availability of data

public use data files available through 1998

contacts

Dr. Barbara Haupt

ADMINISTRATIVE INFORMATION

dataset

National Nursing Home Survey

abbrev NNHS

parent study

National Health Care Survey

 

Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

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

Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

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

Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

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

Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

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

Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

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

Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

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

Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

 

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)

Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

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%

 

Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

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

Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

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

Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

 

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

 

Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 73
Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 74
Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 75
Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 76
Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 77
Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 78
Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 79
Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 80
Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 81
Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 82
Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 83
Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 84
Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 85
Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 86
Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 87
Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 88
Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 89
Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 90
Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 91
Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 92
Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 93
Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 94
Suggested Citation:"Appendix A: Administrative Information for Relevant Datasets." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 95
Next: Appendix B: Information on Selected Variables »
Describing Death in America: What We Need to Know: Executive Summary Get This Book
×
Buy Paperback | $45.00 Buy Ebook | $35.99
MyNAP members save 10% online.
Login or Register to save!
Download Free PDF

National expenditures for medical care in the months and days preceding death are enormous. But we do not know whether that money is buying good quality care or optimizing the quality of life of those dying, or whether the situation is getting better or worse over time. The information that exists “describing death” at a national level – though some of it is very informative – is fragmentary. This report recommends ways to fill the information gaps by better use of existing nationally-representative data, and through some new measures, in particular, a new, ongoing National Mortality Followback Survey. The aim is to allow us to benchmark where we are today as a society, and what goals we can set to minimize pain and suffering and maximize the quality of life of all of us who will die in the years to come.

  1. ×

    Welcome to OpenBook!

    You're looking at OpenBook, NAP.edu's online reading room since 1999. Based on feedback from you, our users, we've made some improvements that make it easier than ever to read thousands of publications on our website.

    Do you want to take a quick tour of the OpenBook's features?

    No Thanks Take a Tour »
  2. ×

    Show this book's table of contents, where you can jump to any chapter by name.

    « Back Next »
  3. ×

    ...or use these buttons to go back to the previous chapter or skip to the next one.

    « Back Next »
  4. ×

    Jump up to the previous page or down to the next one. Also, you can type in a page number and press Enter to go directly to that page in the book.

    « Back Next »
  5. ×

    Switch between the Original Pages, where you can read the report as it appeared in print, and Text Pages for the web version, where you can highlight and search the text.

    « Back Next »
  6. ×

    To search the entire text of this book, type in your search term here and press Enter.

    « Back Next »
  7. ×

    Share a link to this book page on your preferred social network or via email.

    « Back Next »
  8. ×

    View our suggested citation for this chapter.

    « Back Next »
  9. ×

    Ready to take your reading offline? Click here to buy this book in print or download it as a free PDF, if available.

    « Back Next »
Stay Connected!