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National Home and Hospice Care Survey

  • Owner / manager
  • Study and sample characteristics
  • Major foci
  • Special supplements and resources
  • Links to other datasets
  • Papers published
  • Dataset accessibility and cost
  • Help desk

 

Key Web Links

Home page
http://www.cdc.gov/nchs/nhhcs.htm

Description
http://www.cdc.gov/nchs/nhhcs/about_nhhcs.htm

Scope of the survey, 2000
https://www.cdc.gov/nchs/nhhcs/nhhcs_scope.htm

Questionnaires

https://www.cdc.gov/nchs/nhhcs/nhhcs_questionnaires.htm

Dataset Summary

NHHCS is a serial cross-sectional survey of home and hospice care agencies in the United States from 1992 to 2000.  Data are collected about agency characteristics, such as number of patients, certification status, and services offered.  In addition, data are collected from each participating agency on a random sample of active and discharged patients, including items such as functional status, geriatric syndromes, and types of services received.  Data from 1996 to 2000 are available for downloading at no cost from the NHHCS website; older data (from 1992-1994) are available for purchase on CD-ROM.  Extensive documentation and analysis tools are available for downloading off the NHHCS website, substantially easing the process of understanding and analyzing the data.  Because of its age, the survey results are getting somewhat out of date, although studies are still being written using NHHCS data.

Expert comments

The advantage of the NHHCS survey is that it includes all types of agencies that provide home health and hospice care without regard to whether the agencies are Medicare certified or whether they are licensed and that it includes data from both home health agencies and hospices, permitting comparisons across these two types of organizations.  Home health agencies and hospices are usually defined in terms of the type of care they provide.  Home health care is provided to individuals and families in their place of residence for the purpose of promoting, maintaining, or restoring health or for maximizing the level of independence while minimizing the effects of disability and illness, including terminal illness.  Hospice care is defined as a program of palliative and supportive care services providing physical, psychological, social, and spiritual care for dying persons, their families, and other loved ones.  Hospice services are available in both home and inpatient settings.  Data are collected through personal interviews with administrators and staff.  The NHHCS is thus particularly suited to conducting analyses that compare organizational or patient characteristics or make comparisons between types of hospice or home care agencies or between hospice to home care.  Given the cross-sectional nature of the data, it is not possible to follow patients longitudinally over time.  In addition, the current patient file and discharged patient file are not linked  - each represents only a snapshot in time.  Given changes in the hospice population since 2000 (now less than 50% cancer patients), unless an updated NHHCS survey is conducted the data will likely become less relevant over time.

Dataset Details

Dataset owner / manager

National Center for Health Statistics (a branch of the CDC)

Study and sample characteristics

Stratified two-stage probability sample of home and hospice care agencies throughout the United States in 1992, 1993, 1994, 1996, and 1998, and 2000.  Data are collected through interviews with agency administrators and staff about characteristics of the agency and on a probability sample of 6 currently-enrolled and 6 recently-discharged patients.  In each study year, data was collected from approximately 1000 to 1400 agencies.
http://www.cdc.gov/nchs/nhhcs/nhhcs_questionnaires.htm

Because of the probability sample design, patient weights and clustering effects must be accounted for in analyzing the data.  Methods for this are clearly described in documentation available for downloading at the NHHCS site.

Major Foci

Major topics of data collection include the following:

Agency characteristics:
•    type of ownership
•    region
•    certification
•    location
•    affiliation

Patient characteristics:
•    basic demographic information
•    primary expected source of payment
•    current residence
•    living arrangements
•    caregiver status
•    services received
•    functional status
•    aid and devices used
•    length of service
•    primary diagnosis

http://www.cdc.gov/nchs/pressroom/04facts/patients.htm

Data file variables at a glance:

Agency file

Agency identifier codes
Number of current patients
Type of ownership
Affiliation
Certification status
1992: Number of full and part-time staff
 Part-time staff hours
 Nonpayroll staff hours
1993-94, 1996, and 1998, and 2000: Services available

Current patient file

Patient identifier code
Sex
Age
Race
Hispanic origin
Marital status
Current living arrangements
Referral source
Diagnoses at admission and at time of survey
1996: Surgical and diagnostic procedures
 related to admission
Type of care received
Primary care giver and relationship
Aids used
Vision and hearing status
Activities of daily living
Instrumental activities of daily living
Services provided
Service providers
1992-94: Number of visits
Amount billed for care
1992-94,1998, and 2000: Dates covered by bill
Primary and secondary sources of payment
 

Discharged patient file

Patient  identifier code
Date of discharge
Sex
Age
Race
Hispanic origin
Marital status
Living arrangements at discharge
Referral source
Diagnoses at admission and discharge
1996, 1998, and 2000: Surgical and diagnostic procedures
 related to admission
Reason for discharge
Type of care received
Primary care giver and relationship
Aids used
Vision and hearing status
Activities of daily living
Instrumental activities of daily living
Services provided
Service providers
1992-94: Number of visits
Amount billed for care
1992-94, 1998, and 2000: Dates covered by bill
Primary and secondary sources of payment

http://www.cdc.gov/nchs/about.htm

Papers Published

Click here for a PubMed search for articles using this dataset.

Survey Reports:
http://www.cdc.gov/nchs/nhhcs/nhhcs_products.htm

Examples of papers published using NHHCS include:

Differences in services provided by hospices based on home health agency certification status.
Rich SE, Gruber-Baldini AL.
Med Care. 2009 Jan;47(1):9-14.

Characteristics of patients receiving hospice care at home versus in nursing homes: results from the National Home and Hospice Care Survey and the National Nursing Home Survey.
Han B, Tiggle RB, Remsburg RE.
Am J Hosp Palliat Care. 2007 Dec-2008 Jan;24(6):479-86.

Home health agency profit orientation and risk for hospitalization: a propensity score analysis of population weighted data.
Smith LM, Lapane KL, Fennell ML, Miller EA, Mor V.
Home Health Care Serv Q. 2008;27(3):240-57.

Differences in hospice use between black and white patients during the period 1992 through 2000.
Han B, Remsburg RE, Iwashyna TJ.
Med Care. 2006 Aug;44(8):731-7.

Ownership status and patterns of care in hospice: results from the National Home and Hospice Care Survey.
Carlson MD, Gallo WT, Bradley EH.
Med Care. 2004 May;42(5):432-8.

Predictors of Live Hospice Discharge: Data from the National Home and Hospice Care Survey (NHHCS).
Kutner JS, Blake MA, Meyer SA.
American Journal of Hospice and Palliative Care. 2002; 19(5):1-7.

Dataset accessibility and cost

Data for survey years 1996 – 2000 are directly downloadable for free at
http://www.cdc.gov/rdc/

In addition to the data files, NHHCS provides clear and extensive documentation of survey methods and aids to analysis, including downloadable SAS and SPSS input statements.  These are available via the web link listed immediately above.

Help Desk

For questions about the data, contact:

Long-Term Care Statistics Branch
Division of Health Care Statistics
National Center for Health Statistics
(301) 458-4747

Request a consultation (SGIM members only)
Members of SGIM may request a one-time consultation with an expert in this dataset, for example, to explore research ideas or to troubleshoot a problem or vexing question. Please click here for guidelines and the request process.