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2004 National Long-Term Care Survey (NLTCS) and Informal Caregivers Survey (ICS)

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Proposed collection; comment request.


The Department of Commerce, as part of its continuing effort to reduce paperwork and respondent burden, invites the general public and other federal agencies to take this opportunity to comment on proposed or continuing information collections, as required by the Paperwork Reduction Act of 1995, Pub. L. 104-13 (44 U.S.C. 3506(c)(2)(A)).


Written comments must be submitted on or before March 17, 2003.


Direct all written comments to Diana Hynek, Departmental Paperwork Clearance Officer, Department of Commerce, Room 6086, 14th and Constitution Avenue, NW, Washington, DC 20230.

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Requests for additional information or copies of the information collection instrument(s) and instructions should be directed to Ronald Dopkowski, Census Bureau, FB 3, Room 3356, Mail Stop 8400, Washington, DC 20233-8400, (301) 763-3801.

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I. Abstract

The primary purpose of the NLTCS and the ICS is to obtain information on the health and functional status of the elderly population in the United States and the people who take care of them in a home environment. A secondary purpose of the 2004 NLTCS is to identify impaired people and their relatives so the survey sponsor, Duke University, can obtain supplemental information from them via follow-up contacts not made by the Census Bureau. The Census Bureau conducted NLTC surveys in 1982, 1984, 1989, 1994, and 1999 and the IC surveys in 1989 and 1999. Beginning with the 1989 NLTCS and ICS, Duke University sponsored the surveys using grant funding received from the National Institute on Aging (NIA). Duke University and the NIA propose the continuation of these two surveys in the spring of 2004. The information obtained from the 2004 surveys will be added to the information from all previous surveys and then used to inform policy decisions relating to the elderly, their care, and the medicare program.

Sample Overview

The 2004 NLTCS sample has a longitudinal component and an aged-in component. The longitudinal portion consists of 13,267 people who responded to one or more of the previous five surveys. The aged-in component consists of 6,600 people: 5,600 who turned 65 years old since the 1999 survey and an additional 1,000 people who are 95 years of age or older. The total sample size is 19,867 and all are selected from the Centers for Medicare and Medicaid Services' (CMS) medicare beneficiary file. Approximately 1,800 people are in a part of the sample designated as the healthy segment.

The sample for the ICS is selected during the NLTCS interview and consists of approximately 3,275 people who are either not paid or members of the NLTCS sample person's family and help or assist the NLTCS sample person. We select one caregiver per NLTCS respondent.

Survey Process

The NLTCS survey consists of a screener interview to determine if a person is impaired or currently living in a nursing care facility. If the person is impaired and living at home, he/she is administered a community interview. If the person is in a nursing care facility, he/she is administered an institutional interview. If the person is part of the healthy segment, he/she is administered a portion of the community interview.

During the community interview, we collect information on people who provide help or assistance to the NLTCS respondents. For the ICS sample, we select the caregiver, if any, who has provided the most help to the NLTCS respondent during the week prior to the interview.

The Census Bureau stores the survey data on a microdata file and delivers a copy of the file to Duke University. The Duke University links the NLTCS and the ICS data with previous NLTCS and ICS data and appends to this data set the administrative medicare information and the data collected from the follow-up contacts with the NLTCS sample people. The Duke University analyzes the data and makes its findings known to the NIA. The Duke University makes two data sets available for research, none of which contain individual identifiers. One data set contains the linked NLTCS/ICS/medicare/follow-up survey data. This data set is sent to the CMS who controls its subsequent use. The second data set contains the linked NLTCS/ICS/follow-up survey data. This data set is kept by Duke University who controls its subsequent use.

Summary of Revisions

The 2004 NLTCS and ICS repeat the 1999 surveys with the following exceptions.

Proxy Respondent Requirements: The selection of eligible proxies will follow a hierarchical structure. This structure was not established in previous NLTC surveys.

Respondent Identification: For each section of the questionnaires, we will identify whether the sample person or a proxy respondent answered the questions. This is important in data assessment. For example, the level of help needed that is reported by an individual is usually less than the amount of help reported by a caregiver. This identification was not done in previous surveys.

Screener Questionnaire: The activities of daily living (ADL) and the instrumental activities of daily living (IADL) will be administered to all noninstitutional sample people. Previous NLTC surveys did not ask people in the longitudinal sample about disabilities during the screener. This created some problems with establishing disability at the time of the screener for weighting purposes.

The screener was expanded to include the new race and ancestry questions developed by the Census Bureau for its demographic surveys and several other demographic questions like educational attainment and marital status. This change consolidates many of the demographic variables in the screener and provides demographic statistics more consistently across the entire sample.

Control Card: The format of the control card will change to accommodate interviewing in an institutional setting. In addition, the control card will collect information on the number of hours worked by the sample persons' children and their spouses. These questions were asked in Start Printed Page 2312the 1994 survey but were excluded from the 1999 survey. The caregiver research community uses this information to determine the potential caregiver universe.

Community Questionnaire: The length of the community interview will be shortened by replacing the lengthy cognitive assessment section used in 1999 with the shorter section used in the 1994 survey. In addition to this change, questions in other sections were modified or eliminated in order to reduce the overall length of the survey.

Institutional Questionnaire: The institutional interview will be changed to allow the sample person to have greater participation than in previous years. If the sample person is not capable of participating due to physical or mental impairment, the sample person's family will be asked to play a larger participatory role. In 1999, most of the information was obtained from the nursing home staff resulting in incomplete data for many of the cases. Also, the list of medical conditions asked in the community interview will be asked in the institutional interview.

ICS: The caregiver selection criteria will be modified. In previous caregiver surveys, caregivers were incorrectly excluded from selection based on conditions defined in the selection process.


In preparation for the 2004 NLTCS and the ICS, Duke University requested the Census Bureau to conduct a complete test in the fall of 2003 to evaluate the changes made to the 1999 NLTCS and ICS.

II. Method of Collection

The Census Bureau's field representatives (FRs) conduct the screening interviews by telephone or by personal visit if the respondent cannot be reached by phone. The FRs conduct all the community and institutional interviews primarily through personal-visit interviewing. Telephone interviewing is allowed if requested by the respondent. The ICS can be conducted either by phone or personal visit following the community interview.

All data are collected using computer-assisted (laptop) interviewing. Advance letters are sent to respondents notifying them of the upcoming survey.

III. Data

OMB Number: 0607-0778.

Form Number: There are no forms. We conduct all interviewing on laptop computers.

Type of Review: Regular.

Affected Public: Individuals.

Estimated Number of Respondents:


NLTCS: 465.

ICS: 35.


NLTCS: 18,850.

ICS: 2,970.

Total: 22,320.

Estimated Time Per Response (in minutes):


NLTCS: 15.

ICS: 30.


NLTCS: 15.

ICS: 30.

Estimated Total Annual Burden Hours:


NLTCS: 116.

ICS: 18.


NLTCS: 4,713.

ICS: 1,485.

Total: 6,332.

Estimated Total Annual Cost: We do not expect respondents to incur any cost other than that of their time to respond.

Respondent's Obligation: Voluntary.

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Legal Authority: Title 42, United States Code, Section 285e-1 and Title 15, United States Code, Section 1525 authorize this survey.

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IV. Request for Comments

Comments are invited on: (a) Whether the proposed collection of information is necessary for the proper performance of the functions of the agency, including whether the information shall have practical utility; (b) The accuracy of the agency's estimate of the burden (including hours and cost) of the proposed collection of information; (c) Ways to enhance the quality, utility, and clarity of the information to be collected; and (d) Ways to minimize the burden of the collection of information on respondents, including through the use of automated collection techniques or other forms of information technology.

Comments submitted in response to this notice will be summarized or included in the request for OMB approval of this information collection. They also will become a matter of public record.

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Dated: January 10, 2003.

Madeleine Clayton,

Management Analyst, Office of the Chief information Officer.

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[FR Doc. 03-927 Filed 1-15-03; 8:45 am]