N C H S - National Home and Hospice Care Survey - Home Health Definitions of Terms

What is the National Home and Hospice Care Survey?
The 2007 National Home and Hospice Care Survey (NHHCS) is the latest in a series of surveys on this important segment of the American health care system. This survey includes the first-ever nationwide survey of home health aides, the group of health care workers who provides the majority of direct care to the country’s 2.2 million home health and hospice patients for more than 10,000 home and hospice care agencies in the United States.
Like the previous surveys periodically conducted since 1992 and most recently in 2000, the 2007 NHHCS uses a national probability sample of home health and hospice agencies to collect data on agency characteristics (including information about staffing), current home health patients and hospice discharges. Based on interviews with the administrators and staff, we collect data on the agencies. This includes ownership, certification status, staffing, employee benefits, number of patients, services provided, and basic charges. We also collect data on patients: demographic characteristics, functional and health status, diagnoses, pain management, medical devices, services received, medications, costs, and sources of payment.

Why should my home health or hospice agency participate?
The NHHCS is a large national study that, because of its size and design, can provide information representative of all home health and hospice agencies in the United States. Because the NHHCS is a periodic survey, the results can be used to track changes in home health and hospice care taking place over time.
Your participation in the NHHCS is important because without your involvement, your home health or hospice agency and other agencies like yours will not be represented in the national description of home health and hospice agencies. Your agency was randomly chosen to represent not only your agency but also other comparably sized agencies located in your geographic region. Your participation will result in more reliable data collection and will permit researchers, policy makers, and the home health and hospice care industry to assess the adequacy of current home health and hospice care and future long-term patient care needs. Failure to participate in the survey lessens the accuracy of data.

How are home health and hospice agencies selected?
Home and hospice care agencies in the United States that are certified (Medicare or Medicaid) or licensed by the state are included in this survey. A home health agency must provide home health care services to patients at the time of the survey. Agencies providing ONLY homemaker and household services or durable medical equipment and supplies to patients are ineligible. A hospice agency must either have patients at the time of the interview or have one or more discharged patients during a specified 3 month period prior to the interview. A representative sample of home health and hospice agencies was selected from a total of about 10,000 of these types of agencies in the United States. The survey sample consists of about 1,800 agencies throughout the United States and up to 10 patients from each agency. The home health and hospice agencies selected to participate were determined by using systematic sampling with probability proportional to size and agency type (home health, hospice, or mixed agency).

How do I know this is a legitimate survey?
The National Home and Hospice Care Survey (NHHCS) has been in existence since 1992 with periodic national surveys conducted by the National Center for Health Statistics (NCHS) since that time. The NHHCS was developed in response to the rapid growth in the number of home and hospice care agencies throughout the United States. This growth led to a need for information on the availability and utilization of services offered by these agencies. The goal of the first survey was to objectively evaluate the health status and services provided to patients and to determine whether the available agencies and staff were sufficient to meet their patient care needs. Today, home health and hospice agencies continue to provide much needed patient services to a large segment of the country’s disabled, ill, and elderly population. As the nation’s total population of older adults grows and the average lifespan continues to increase, we need to continue to assess the availability and adequacy of these services.
For more information, call this toll-free 800 number, 1-888-798-6674, to find out more about the National Home and Hospice Care Survey. You can also request to speak with representatives from the Federal agencies that sponsor the survey.

Is information given confidential?
The NHHCS is authorized by Congress in Section 306 of the Public Health Service Act (42 USC 242K). In accordance with Section 308(d) of the Public Health Service Act (42 USC 242m), no information collected in this survey may be used for any purpose other than the purpose for which it is collected. Such information may not be published or released in any form if the individual or establishment is identifiable unless the individual or establishment has consented to such release. The information you and your staff supply will be used solely for statistical research and reporting purposes. If any federal employee or contractor gives out confidential information not authorized by law, he or she can be fired, fined, and/or imprisoned.

Does the HIPAA Privacy Rule allow my agency to participate in this survey?
Yes. The Privacy Rule permits you to make disclosures of protected health information without patient authorization for public health purposes and for research that has been approved by an Ethics Review Board (ERB). This survey meets both of those criteria. Protected health information includes all medical records and other individually identifiable information used or disclosed by an entity subject to the Privacy Rule. This would include directly identifiable information such as patient names and social security numbers, in addition to other information that could be used to identify an individual.

Also, NCHS' Privacy and Data Release Policies and Current Legislative Authorities Web sites provide required information for you to verify that you are allowed to disclose to NCHS/CDC the information requested by the survey. The Web sites include information on the authority under which NCHS is collecting these data and that the data being collected are the minimum information necessary.

Your agency must keep track of disclosures made for this survey. The interviewer will give you a disclosure form for each patient, as required by law, which contains the disclosures made as part of this survey.

What is involved in participating?
A survey representative will contact you for an appointment. An interviewer will then visit your agency at a time that is most convenient to you. Information is collected primarily by personal interview with administrators and their staff. The survey collects information on ownership, staffing, employee benefits, number of patients, certification status, services provided, and basic charges. Data on patients: demographic characteristics, functional and health status, diagnoses, pain management, medical devices, services received, medications, costs, and sources of payment are also collected. Staff is asked to refer to patients’ medical records to provide information on health and functional status. Patients will not be contacted at any time.
In all the sampled home health and hospice agencies, we will also l select a sample of up to six home health aides who provide patients with assistance in activities of daily living (ADLs) (eating, transferring, toileting, dressing, and bathing) for a voluntary off-site telephone interview. All information collected is held in the strictest confidence and will be used to prepare statistical summaries only.

Who can I contact if I have additional questions?
You can call our toll-free number, 1-888-798-6674, to talk with a survey representative about the National Home and Hospice Care Survey.

If you have any further questions or comments related to participating in this survey, please contact Lauren Harris-Kojetin at:

National Center for Health Statistics
Long-term Care Statistics Branch
3311 Toledo Road Room 3431
Hyattsville, Maryland 20782
Phone: 301-458-4369
Fax: 301-458-4693
Email:fti3@cdc.gov