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Overview of the National Long Term Care Survey (NLTCS)

Conference on Chinese Healthy Aging and Socioeconomic Development

Durham, NC

August, 2004

Nicholas Holt

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Topic Guide

Survey Objectives Background Survey Design Survey Content Innovations Research Results

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Objectives NLTCS – to characterize the health

and functional status of the population 65 years and older

Informal Caregiver Survey – to examine how family and social relations help chronically disabled persons function in the community

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Background

Established in 1982 as a cross-sectional survey

Sponsored by HCFA in 1982-1984 Picked up by NIA and the Center for

Demographic Studies in 1989 Additional Funding from ASPE in all

waves beginning in 1989

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Background

Has both longitudinal and cross-sectional aspects

Waves are nominally 5 years apart Particular emphasis on functionally

impaired individuals

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Background

Nationally representative measures of: Longitudinal and cohort patterns of change in

functional limitation Mortality Health care and other services, formal and

informal, received by impaired How care is paid for

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Design of Survey

Entire sample gets a screener interview

Disabled get a detailed interview Community Institutional

Disability is defined by the screener interview

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The Sample

A probability sample of persons aged 65 and older

Added in groups over time (healthy supplement)

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The Sample (1)

1982 a probability sample from the

MEDICARE files large enough to yield 6000 community disabled people (~35,000)

conceived as a cross-sectional survey Census Bureau drew the sample and

conducted the actual interviews

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The Sample (2) 1984

Sample included all community and institutional disabled plus a probability sample of the non-disabled from 1982 sample

plus a probability sample from all who became 65 years old since 1982

Census Bureau drew the probability sample and conducted the actual interviews

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The Sample (3)

1989 - on Sample included all disabled who were

disabled in the prior wave plus some or all of the non-disabled from prior wave

plus a probability sample from all who became 65 years old since previous wave

Census Bureau drew the probability sample and conducted the actual interviews

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Sample SizesInterview 1982 1984 1989 1994 1999 200

4Screener 11,57

013,78

610,33

010,47

411,00

2Community 6,088 5,954 4,463 5,089 5,147Institutional 1,992 1,773 1,354 1,330 1,036

Ancillary

Caregiver 1,007 1,600Next-of-Kin 3,219 544Venipuncture 639

Buccal 2,083

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Survey Content Questionnaire content came from several sources Questions

Disability, medical conditions, physical functioning, cognitive functioning

Caregivers Nutrition, perceived health status Living arrangements, income, and education

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Screener Interview

Primarily done by phone Determines whether or not the

subject gets a detailed interview Determines whether subject gets a

community interview or an institutional detailed interview

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Detailed interview questions

Medical conditions

Disability (ADL & IADL)

Range of motion and impairment

Cognitive functioning

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Detailed interview questions

Insurance Income Children and siblings Medical providers and prescription

drugs

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Detailed interview questions

Helpers Caregiver selection Nutrition and social activities Institutional

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Demographic Variables

Demographic and economic characteristics age, race, sex, marital status

education, income and assets, housing and neighborhood characteristics

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Innovations

Added a sample of caregivers starting in in 1989

Starting in 1994 a sample of non-disabled screen-outs were interviewed

Starting in 1994 a supplementary sample of 95+ was added

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Supplemental Surveys

Next-of-Kin Mortality Follow Up (1984 and 2000)

Biological Specimens 638 bloods in 1999 1172 buccal washes in 1999 3000 bloods planned in 2004 1000 buccal washes planned in 2004

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Medicare Data

Survey data supplemented with linked Medicare claims history from CMS for each survey participant

Medicare data linked to NLTCS survey data and furnished to CMS

Researchers must obtain Medicare data directly from CMS

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Research Results

Chronic disability Severe cognitive impairment Medicare expenditures Genetic studies

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Possible Research Areas Function limitations, physical and cognitive Patterns of change Medical conditions Health care services used Caregiver assistance Demographic and economic characteristics Out of pocket expenditures

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Survey Data

Survey data can be obtained from CDS or, with some added value from Unicon, Inc.

http://www.unicon.com/ In either case the DUA will be signed with

CDS

http://nltcs.cds.duke.edu/index.htm