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National Invitational Conference on Long-Term Care Data Bases: Conference Package

Publication Date

Office of Social Services Policy

This package--distributed at a national conference held at the Ritz-Carlton Hotel, Washington, D.C. on May 21-22, 1987--was prepared by the Office of Social Services Policy with the U.S. Department of Health and Human Services. For additional information, you may visit the DALTCP home page at http://aspe.hhs.gov/daltcp/home.htm or contact the Office of Disability, Aging and Long-Term Care Policy, Room 424E, H.H Humphrey Building, 200 Independence Avenue, SW, Washington, DC 20201. The e-mail address is: webmaster.DALTCP@hhs.gov. The DALTCP Project Officer was Robert Clark.

The conference package begins as follows:

  • A package table of contents.

  • A list of names and addresses for the 264 conference participants--24 presenters/speakers and 240 attendees. Among the attendees were government policy analysts, outside researchers and insurance industry representatives.

  • A copy of the agenda for the two day conference, including the topics discussed at each session and who presented each survey.

  • Short summaries of the major surveys discussed at the conference--National Long-Term Care Channeling Demontration, 1982/1984 National Long-Term Care Survey, 1985 National Nursing Home Survey and 1984 National Health Insurance Survey/Supplement on Aging.

Below are abstracts of the papers submitted by presenters at the conference. These papers are not distributed separately by the Office of Social Services Policy.

 

A. THE 1982/1984 NATIONAL LONG-TERM CARE SURVEY

The 1982 and 1984 National Long Term Care Surveys: Their Structure and Analytic Uses (Kenneth G. Manton and Korbin Liu)

With the rapid increase in the U.S. elderly (65+) and oldest-old (85+) populations, considerable concern has emerged over the amount of future acute and long-term care (LTC) services that will be required by that population, and of the nature of the mixture of federal, state and private programs necessary to respond to that need. One of the areas of service needs with the projected greatest rate of growth is that for LTC services. The National Nursing Home Surveys (NNHS) conducted by the National Center for Health Statistics (NCHS) in 1963, 1969, 1973, 1977 and, most recently, 1985 (with a follow-up in 1987) have provided considerable information on the institutional component of LTC services. More recently, because of the rapid growth of the elderly and oldest-old populations, considerable interest has emerged in home LTC options, both because of concern about the economics of institutional care and because of humanitarian concern about the level of dependency and quality of life in many LTC institutions. Until the advent of the National Long-Term Care Survey (NLTCS) there was no major nationally representative survey with specially designed instrumentation that dealt explicitly both with the health and functional problems of the community dwelling disabled elderly, the home LTC options (both formal and informal) available to meet those problems, and the ability to substitute, for a specific target population, home and institutional care. The 1982 NLTCS filled this gap in our knowledge and provided considerable information on which both to plan the nature of required services and to develop private insurance products to pay for such services. The 1984 NLTCS provided a basis upon which to examine changes in the home LTC populations and to examine the trajectory of service needs at the individual level.

The 1982 and 1984 NLTCS are detailed household surveys of persons aged 65 and over who manifest some chronic (i.e., 90 days +) Activity of Daily Living (ADL) or Instrumental Activity of Daily Living (IADL) impairment. The sample for the surveys was drawn using a two-stage procedure. In 1982, 36,000 names were drawn from the Health Insurance Master file. These persons were then screened by either telephone or personal visit to see if they manifested an ADL or IADL impairment of 90 days duration (or which was anticipated to last at least 90 days). When the screen identified a person living in the community with a chronic impairment, a detailed household interview was conducted which gathered information on medical status (diagnoses), functional status (presence of ADL, IADL or other functional impairments and equipment or caregivers utilized by the person to deal with his impairments), income and assets, health service use, use of federal services, housing and living arrangements. Of particular note in the survey were detailed questions on the number and type of informal caregivers. Institutionalized persons were not interviewed in 1982.

In 1984, a different sampling procedure was utilized. First, all persons who reported chronic disability on the screener or who were screener-noninterviewed due to institutionalization and who survived to 1984 were interviewed regardless of their 1984 functional status. Second, from the original 25,541 persons who did not report functional impairments in 1982 (and who were not institutionalized), a random sample of 47% (~12,100 persons) was drawn and subjected to the same screening procedure as in 1982. Another difference from 1982 was that 5,000 persons who became 65 between 1982 and 1984 were screened so that, in addition to having a longitudinally followed sample in 1984, the full cross-section of persons aged 65 and over in 1984 could be evaluated. In addition, persons who were in institutions in 1984 were interviewed with a specially designed instrument containing a number of questions on institutional use in the interim period and the sources of payment for those services. The interview instrument used for the community population was nearly identical in 1984 to that used in 1982. A final major difference between the 1982 and 1984 surveys was that a "next of kin" interview was conducted for persons who died between 1982 and 1984. This interview collected extensive data on the medical service use and expenditures surrounding death.

The 1982 and 1984 NLTCS are nationally representative surveys of a target population at high risk for high levels of both acute and LTC services. In addition the survey files are linked to Medicare Part A records. These surveys and linked files represent an extremely rich data source describing all the health and functional transitions of individuals in this population, detailed characteristics on the person at the time of the survey and detailed data on informal caregivers. These files can provide extremely valuable information on the service needs of the LTC population, changes in those needs and associated acute care needs.

 

B. NATIONAL LONG-TERM CARE CHANNELING DEMONSTRATION

The Channeling Evaluation Data Base: A Research Opportunity (Judith Wooldridge, et al.)

In September 1980 the National LTC Demonstration--known as channeling--was initiated by three units of the United States Department of Health and Human Services (DHHS)--the Office of the Assistant Secretary for Planning and Evaluation (ASPE), the Administration on Aging, and the Health Care Financing Administration (HCFA). It was to be a rigorous test of comprehensive case management of community care as a way to contain the rapidly increasing costs of LTC for the impaired elderly while providing adequate care to those in need.

Channeling was designed to use comprehensive case management to allocate community services appropriately to the frail elderly in need of LTC. The specific goal was to enable elderly persons, whenever appropriate, to stay in their own homes rather than entering nursing homes. Channeling financed direct community services, to a lesser or greater degree according to the channeling model, but always as part of a comprehensive plan for care in the community. It had no direct control over medical or nursing home expenditures.

Several data sources were used. These included telephone and in-person surveys of the elderly members of the research sample and, for a subset, their primary informal caregivers; Medicare, Medicaid, channeling project, and provider records; and official death records obtained from state agencies. Finally, federal, state, local, and project staff were interviewed about the implementation and operation of the demonstration (these data are not included in the public use files).

The extensive data collected for the channeling evaluation create many research possibilities. Its special purpose--to form the basis of an evaluation--makes it better suited for some analyses than for others. Because it is a selected sample--data came from ten sites selected through competition, and the sample comprises applicants referred to a special community care program--descriptive analysis using the channeling data are less likely to be informative than analysis of the same questions using nationally representative data. The channeling data appear more appropriate for analyses that do not depend on representativeness but capitalize on the richness of the data or their original purpose.

The channeling data appear most useful for analyses of behavioral relationships, methodological research, or re-analysis of experimental results. The extensive data on the well-being of the elderly sample, for example, is fertile ground for psychometric analysis of quality of life measures or analysis of the determinants of well-being, but would not be appropriate for an analysis of the extent of unmet need in the United States. To estimate the cost of community care and nursing home care for use in calculating premiums for LTC insurance, channeling data would have to be used in conjunction with other data (e.g., a nationally representative sample); otherwise, the estimates would pertain to the selected channeling sample rather than to likely purchasers of LTC insurance.

 

C. NATIONAL HEALTH INTERVIEW SURVEY: 1984 SUPPLEMENT ON AGING

1. The Supplement on Aging to the 1984 National Health Interview Survey (Joseph E. Fitti and Mary Grace Kovar)

Concerns among a number of public health agencies and individuals about the increasing proportion of older people in the United States population led, as early as 1980, to recommendations that the National Health Interview Survey (NHIS) address this special subgroup. Issues dealing with the health and functional status of older people and the need for alternatives to institutionalization as the mode for providing care were identified at this early point by professionals in the field of aging. Information about these and related characteristics of the older population was needed.

Statements of the need for this information were made by DHHS in the 1980 National Long Term Care Plan of the Division of Long Term Care Policy, ASPE; by the Office of Management and Budget (OMB) in its 1980 report of the Interagency Statistical Committee on Long Term Care of the Elderly; and by the 1981 White House Conference on Aging.

It was postulated that information about the health conditions that were most prevalent, about living arrangements, family and social support availability, retirement income and financial obligations, functional status and limitations, and attitudes and opinions about their own health and abilities would help in assessing the future needs of the elderly.

In addition to responding to the topic recommendation of the NHIS's Technical Consultants Panel that these informational needs about the elderly could be addressed through the NHIS, a special Supplement on Aging in 1984 was particularly timely because the NCHS planned to conduct the NNHS in 1984 (later postponed to 1985). An NHIS survey on the elderly would provide data on the noninstitutionalized population which would complement the NNHS data on residents of nursing homes and would provide, for the first time, comprehensive data on almost the total elderly population.

2. NCHS Division of Health Interview Statistics: National Health Interview Survey

The NHIS is the principal source of information on the health of the civilian noninstitutionalized population of the United States. The NHIS is one of the major data collection programs of the NCHS. The National Health Survey Act of 1956 provided for a continuing survey and special studies to secure accurate and current statistical information on the amount, distribution, and effects of illness and disability in the U.S. and the services rendered for or because of such conditions. The survey referred to in the Act, now called the NHIS, was initiated in July 1957. Since 1960, the survey has been conducted by NCHS, which was formed when the National Health Survey and the National Vital Statistics Division were combined.

The objective of the survey is to address major current health issues through the collection and analysis of data on the civilian noninstitutionalized population of the U.S. National data on the incidence of acute illness and injuries, the prevalence of chronic conditions and impairments, the extent of disability, the utilization of health care services, and other health-related topics are provided by the survey. A major strength of this survey lies in the ability to display these health characteristics by many demographic and socioeconomic characteristics.

The NHIS data are obtained through personal interviews with household members. Interviews are conducted each week throughout the year in a probability sample of households. The interviewing is performed by a permanent staff of interviewers employed by the U.S. Bureau of the Census. Data collected over the period of a year form the basis for the development of annual estimates of the health characteristics of the population and for the analysis of trends in those characteristics.

The survey covers the civilian noninstitutionalized population of the U.S. living at the time of the interview. Because of technical and logistical problems, several segments of the population are not included in the sample or int the estimates from the survey. Persons excluded are: patients in LTC facilities; persons on active duty with the Armed Forces (though their dependents are included); and U.S. nationals living in foreign countries.

 

D. THE 1985 NATIONAL NURSING HOME SURVEY

1. 1985 National Nursing Home Survey (Esther Hing, et al.)

As part of its continuing program to provide information on the health of the Nation and the utilization of its health resources, NCHS periodically conducts a nationwide survey of nursing facilities. The 1985 NNHS, the third in a series, is authorized under Section 306 (42 USC 242k) of the Public Health Services Act. Facilities covered in the survey are those providing some level of nursing or personal care without regard to licensure status or to certification status under Medicare or Medicaid. Participation is voluntary.

The purpose of the NNHS is to collect baseline and trend statistics about nursing facilities, their services, residents, discharges, and staff. The resulting published statistics will describe the Nation's nursing facilities and the health status of their residents. These data are used for studying the utilization of nursing facilities, for supporting research directed at finding effective means for treatment of long-term health problems, and for setting national policies and priorities.

Confidentiality is provided to all respondents in the NNHS as assured by Section 308(d) of the Public Health Services Act (42 USC 242m) which states that: "Information...which would permit identification of any individual or establishment...will be held in strict confidence, will be used only for the purposes stated for this study, and will not be disclosed or released to others without the consent of the individual or establishment."

Data were collected from a nationally representative sample of 1,220 nursing and related-care homes using a combination of personal interview and self-enumeration techniques. Information about the facility (e.g., number of beds, certification status, number and kinds of staff) was collected through a personal interview with the administrator or designee. With the administrator's permission, a questionnaire was sent to the facility's accountant to obtain basic expense and revenue information and to a maximum of four registered nurses to obtain information related to job retention. Through interviews with appropriate nursing staff, information was collected on maximum samples of five current residents and six recent discharges. In addition to basic demographic information, data were collected about the sample patients' medical conditions, impairments, functional limitations, services received and sources of payment. A family member of the patient was contacted by telephone to obtain data on socioeconomic status and prior episodes of health care--information which generally is not available at the facility.

The results of the 1985 NNHS will be released in publications and public use computer tapes. As noted in the above section on confidentiality, no information will be released which identifies individuals or establishments. Publication plans include pamphlets presenting preliminary data, a summary volume presenting detailed tabulations, and individual analytical reports on special topics such as utilization measures and resident characteristics. Release of data will begin in 1987.

2. NCHS Advance Data

Nursing Home Characteristics Preliminary Data from the 1985 NNHS. 1 NNHS is a nationwide (excluding Alaska and Hawaii) sample survey of nursing and related care homes, their residents, their discharges and their staff conducted periodically by NCHS. Preliminary data on nursing home characteristics from the 1985 NNHS are presented in this report. Because the estimates in this report are preliminary, they may differ slightly from estimates published in future 1985 NNHS reports due to further editing of the data. The 1985 NNHS is the third in a series of periodic surveys conducted between August 1985 and January 1986. The first NNHS was conducted between August 1973 and April 1974; the second survey was conducted from May through December 1977. For convenience, this report will use the terms "nursing and related care homes," "nursing homes," and "facilities" interchangeably.

The focus of this report is facility characteristics and will include trend data about the characteristics and will include trend data about the characteristics of facilities from all three surveys and national estimates on the following topics from the 1985 survey: (1) facility characteristics (number of homes and beds by ownership, certification, bed size, region, and affiliation); (2) utilization data (number of current residents, discharges, admissions, admissions per bed, and occupancy rates); (3) employees (number and rates per 100 beds of full-time equivalent employees by occupational category according to selected facility characteristics); and (4) nursing home per diem rates (data on basic amount charged private pay patients by level of care and per diem rates for Medicare/Medicaid patients by certification status according to ownership and location of the facility).

Use of Nursing Homes by the Elderly: Preliminary Data from the 1985 NNHS. 2 Most elderly people are not in nursing homes. Of an estimated 28.5 million Americans aged 65 years and over in the United States, only 5 percent were residents of nursing homes on any given day from August 1985 through January 1986. This finding from the 1985 NNHS is consistent with findings from previous NNHSs conducted in 1973-74 and 1977. 3 In these surveys also it was found that about 5 percent of the elderly were residents of nursing homes.

Differences, however, exist in the use of nursing homes by age, sex, and race subgroups. In this report, these differences in use rates are examined. Differences in the health and socio-economic characteristics examined in this report are functional dependencies in the basic ADLs--bathing, dressing, using the toilet room, transferring from a bed or chair, continence, and eating; cognitive functioning (disorientation or memory impairment and senile dementia or chronic organic brain syndrome); marital status at admission; whether residents had living children; living arrangements prior to admission to the nursing home; and primary source of payment at admission. The focus of this report will be a comparison of the characteristics of the elderly who reside in nursing homes with characteristics of those who reside in the community.

The data presented in this report are from the 1985 NNHS, a nationwide sample survey of nursing homes, their residents, discharges, and staff conducted by NCHS. The survey, which was conducted from August 1985 through January 1986, was the third of a continuing series of nursing home surveys. The first survey was conducted from August 1973 through April 1974, and the second was conducted from May through December 1977.

Facilities included in the 1985 NNHS were nursing and related care homes in the conterminous United States that had three or more beds set up and staffed for use by residents and that routinely provided nursing and personal care services. A facility could be free standing or could be a nursing care unit of a hospital, retirement center, or similar institution as long as the unit maintained financial and employee records separate from the parent institution. Placed providing only room and board were excluded, as were places serving only persons with specific health problems (for example, mental retardation or alcoholism).

The sampling frame for the 1985 NNHS consisted of the following components: the 1982 NMFI, 4 a census of nursing and related care homes conducted by NCHS; homes identified in the 1982 Complement Survey of the NMFI as "missing" from the 1982 NMFI; nursing homes opened for business from 1982 through June 1984; and hospital-based nursing homes identified in records of HCFA. The resulting frame contained 20,749 nursing homes. In this report, the terms "nursing homes" and "nursing and related care homes" are used interchangeably.

Estimates in this report are based on a sample of 4,646 elderly residents of the 1,079 nursing homes participating in the survey. A fixed sample of five or fewer residents per sample facility was selected. Residents included in the sample were those on the nursing home's roster the night before data collection began. Data were collected by interviewing knowledgeable nursing home staff members, who referred to the residents' medical records when necessary. Additional followup information on the sample residents was collected by telephone interview with the residents' next-of-kin. (A resident's guardian or friends were contacted if there was no next-of-kin.) Data collected from the next-of-kin focused on the circumstances and reasons for the resident's nursing home admission. In this report, only data obtained from the nursing home staff are presented. In later reports estimates from the next-of-kin component will be included.

Data presented in this report are preliminary and may differ slightly from estimates presented in later reports because of further data editing. Another report presenting preliminary estimates of nursing homes and utilization characteristics of homes has already been published. 5

Although data on residents reported by the nursing home staff were collected in a similar manner in earlier NNHSs as in the 1985 survey, note should be taken of some differences. First, personal care and domiciliary care homes were excluded from the scope of the 1973-74 NNHS but included in the two later surveys. The effect of this difference, however, is small because only about 2 percent of all nursing homes in 1973 were personal care or domiciliary care homes and they housed only about 1 percent of the beds and residents. 6 Second, certain variables presented in this and later reports were not available from the previous surveys. Data on some variables discussed in this report--marital status at admission, the presence of living children, ability to transfer in or out of a bed or chair, and primary source of payment at admission--were not collected as a single item in the 1973-74 and 1977 surveys but as separate items in 1985. This difference should be considered when comparing data by race from the 1985 NNHS and previous surveys.

 

E. OTHER RELEVANT DATA BASES

1. 10 Years After NHANES I: Report of Initial Followup, 1982-84 (Jennifer H. Madans, et al.)

The National Health and Nutrition Examination Survey (NHANES I) was carried out in 1971-75 and was designed to collect extensive health-related information on a probability sample of the U.S. civilian non-institutionalized population (see references 1-3 for a complete description of the NHANES I survey design). To increase sample size in selected population subgroups, there was over-sampling of the elderly, of women of childbearing age, and of persons living in poverty areas.

The NHANES I Epidemiologic Followup Study (NHEFS) builds on the baseline data collected in NHANES I. The objectives of the followup are to study: (a) mortality, morbidity, and institutionalization associated with suspected risk factors; (b) changes in the participants' characteristics between NHANES I and the followup survey; and (c) the progression of chronic disease and functional impairments. The study population was the 14,407 examinees in NHANES I who were 25-74 years old at the time of that survey. An attempt was made to trace all these examinees to their current addresses. Personal interviews, which included weight, blood pressure, and pulse measurements, were conducted with survivors. Personal interviews were also conducted with suitable proxies for deceased or incapacitated participants.

The NHEFS is a multi-purpose, collaborative longitudinal study which uses several different data collection mechanisms to secure information to address significant epidemiologic and public health issues. It is unique in that a nationally representative probability sample of the U.S. population with extensive baseline clinical findings was followed longitudinally. The material presented in this paper shows that tracing, interviewing, physical measurements, and death certificate acquisition were quite successful.

The NHEFS is an ongoing project. Although data collection for the initial followup ended officially in 1984, records of hospitalizations and deaths that occurred during the initial followup period, but were missing from the file, are still being sought. Updates to the data files will be made periodically. An additional round of data collection for those age 55 and older at baseline was started in 1985 and will be completed in 1986. Another followup of the entire cohort is scheduled for 1986-87. Efforts will continue to locate those currently lost to followup. The cohort will continue to be matched against the National Death Index (reference 8) to identify additional decedents.

2. Other Long-Term Care Data Sources (Aurora A. Zappolo)

The data bases discussed in this conference are large, primarily national data bases specifically designed to address LTC questions. These data bases are of special interest because they provide current information on the functionally impaired, elderly population in nursing homes and in the community. A number of questions can be answered by these data bases, especially those which concern the magnitude of the populations covered in these surveys.

However, there are other data bases on LTC or related topics, some of which address additional key questions. There are other national data bases, sub-national data bases, and data bases from other countries. Some are not yet available, some are available only in the form of published data, and others are fully available in data tape form. This presentation will give examples of some additional data bases which may be useful as supplements to the basic information available in the major studies and suggest sources of additional data bases.

Four categories of data bases are discussed: (a) other national studies available or underway; (b) State data bases; (c) special studies in small areas; and (d) data bases from other countries.

3. The Inventory of Long-Term Care Places (Curt D. Mueller and D.E.B. Potter)

The Inventory of Long-Term Care Places (ILTCP) is a comprehensive listing of nursing and personal care homes and facilities for the mentally retarded/developmentally disabled. It was created to serve as a sampling frame for the Institutionalized Population Component (IPC) of the 1987 National Medical Care Expenditure Survey (NMES). The IPC is currently collecting medical care use and expenditures data for persons residing in nationally representative samples of nursing homes and facilities for the mentally retarded. The IPC facility sample was selected from the universe of places as depicted by the ILTCP, and ILTCP data were used to stratify the frame prior to the sample draw. The ILTCP is of interest from a research standpoint because it is the most up-to-date census of nursing and personal care homes and facilities for the mentally retarded.

ILTCP development and field work was co-sponsored by the National Center for Health Services Research and Health Care Technology Assessment (NCHSR), NCHS, and HCFA. Planning for the ILTCP began in late 1984, with planning for the IPC. Each agency recognized the importance of documenting medical care use and expenditures by persons in LTC places.

Work on the ILTCP is outlined and discussed in an Interagency Agreement between NCHSR, NCHS, and HCFA (1985) and the Request for OMB Review (1985). In summary, a self-enumeration mail questionnaire was developed by the co-sponsoring agencies. Its purpose was to identify facilities considered in scope for NMES and to provide the various data items necessary for stratification of the NMES samples. NCHS personnel compiled address listings for questionnaire mailing, and negotiated and monitored an Interagency Agreement with the Census Bureau to complete data collection field work and data processing. Questionnaire design work was completed in January 1986. Mailing lists were delivered to the Census Bureau, and data collection began in February. Field work was completed the following July, and data tapes were delivered to the co-sponsors in September 1986.

The ILTCP data are particularly useful in characterizing and studying the availability of institutional LTC resources for the elderly and mentally retarded. The ILTCP can be used to generate numbers of facilities, residents, and beds by various facility characteristics, such as ownership type, certification, and geographic location (state or region). Data can be used to characterize LTC resources at a point in time, or in conjunction with other existing data bases to examine changes over time. A limitation of the data is that they are currently unedited. Some data items are missing for some facilities. This may require that analysts be prepared to do some data cleaning and imputations.

Several studies using the ILTCP data are in progress at NCHSR, and will be available soon. These include descriptions of nursing home bed availability, numbers of residents in facilities for the mentally retarded/developmentally disabled, and analyses pertaining to the NMES sample selection procedures.

4. Directory of Agency Heads and Contact Persons for Designated State Statistical Agencies

This is a name and address list of agency heads and (if not the agency head) a contact person for each State's statistical agency.

 

NOTES

  1. Excerpted or abstracted from the National Center for Health Statistics publication NCHS Advance Data, Number 131, March 27, 1987. Article written by Genevieve Strahan, Division of Health Care Statistics, National Center for Health Statistics.

  2. Excerpted or abstracted from the NCHS publication NCHS Advance Data, Number 135, May 14, 1987. Article written by Esther Hing, Division of Health Care Statistics, NCHS.

  3. NCHS, E. Hing: Characteristics of nursing home residents, health status, and care received, NNHS, United States, May-December 1977. Vital and Health Statistics. Series 13, No. 51, DHHS Pub. No. (PHS)81-1712. Public Health Service. Washington. U.S. Government Printing Office, April 1981.

  4. NCHS, D. Roper: Nursing and related care homes as reported from the 1982 NMFI. Vital and Health Statistics. Series 14, No. 32, DHHS Pub. No. (PHS)86-1827. Public Health Service. Washington. U.S. Government Printing Office, September 1986.

  5. NCHS, G. Strachan: Inpatient health facilities as reported from the 1973 NMFI Survey. Vital and Health Statistics. Series 14, No. 16, DHHS Pub. No. (HRA)76-1811. Health Resources Administration. Washington. U.S. Government Printing Office, May 1976.

  6. NCHS, A. Sirrocco: Inpatient health facilities as reported from the 1973 NMFI Survey. Vital and Health Statistics. Series 14, No. 16, DHEW Pub. No. (HRA)76-1811. Health Resources Administration. Washington. U.S. Government Printing Office, May 1976.

Topics
Long-Term Services & Supports (LTSS)