National Home and Hospice Care Survey

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Approximately 1,800 home health and hospice agencies will be selected to participate in an important national health care survey. During the fall of 2007, the National Center for Health Statistics, a part of the Centers for Disease Control and Prevention, will conduct the National Home and Hospice Care Survey (NHHCS). The NHHCS is a nationally representative sample survey of home health and hospice agencies, their current patients, discharges, and staff. Data from the NHHCS have been used to:

  • track changes in home health care use provided to individuals and families in their place of residence since 1992
  • track changes in end-of-life hospice care in both home and hospice settings
  • identify changes in the use of hospice care services resulting from the availability of the Medicare Hospice Benefit, which began in 1983 and Medicaid reimbursement for hospice care in 1986
  • assess the shortage of frontline caregivers (registered and licensed practical nurses, home health aides, certified nurse aides, and other direct care workers) in long-term care settings, including home health and hospice care, and make recommendations to Congress to address the increasing demand of a large aging generation.

As the population of older adults is projected to double in the next 25 to 30 years, need for home health aides also is projected to grow. In 2007, NCHS will conduct the first national survey of home health aides providing much needed information on this long-term care workforce. All of the home health and hospice agencies selected to participate in the NHHCS will be eligible for the National Home Health Aide Survey (NHHAS). This supplemental survey will include a nationally representative sample of home health aides who work in home health and hospice agencies and provide patients with assistance in activities of daily living (ADLs).

Information for NHHCS Participants

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.

Industry associations, including the National Association for Home Care and Hospice Cdc-pdf[PDF – 51 KB], the National Hospice and Palliative Care Organization Cdc-pdf[PDF – 21 KB], and the Paraprofessional Healthcare Institute Cdc-pdf[PDF – 120 KB], support our survey as well.

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 Cdc-pdf[PDF – 235 KB] 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 Cdc-pdf[PDF – 8 KB] 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

Information for NHHAS Participants

About 6,000 eight home health aides from all the agencies participating in the National Home and Hospice Care Survey (NHHCS) will be selected to take part in a new national survey of home health aides. The National Home Health Aide Survey (NHHAS) will help the home health and hospice industry develop more effective ways to recruit, train, and retain home health aides.

What is the National Home Health Aide Survey?

The National Home Health Aide Survey (NHHAS) is the first national study of home health aides working in home health and hospice agencies in the United States. The U.S. Department of Health and Human Services is sponsoring the study. About 6,000 home health aides will be chosen for the NHHAS from about 1,500 home health and hospice agencies across the country. The NHHAS will look at the important role of home health aides in providing long-term care services for the growing elderly and chronically ill population.

The NHHAS, part of the National Home and Hospice Care Survey, will provide new information needed to recruit, retain, and expand the workforce who provides the direct care to home health and hospice patients. We will conduct this first national survey of home health aides as a telephone interview with a sample of workers who provide home health and hospice patients with assistance in activities of daily living (ADLs) (eating, transferring, toileting, dressing and bathing). The survey includes collecting information on whether workers plan to continue working in their present positions and what factors affect their decisions, including job satisfaction, nature of the work environment, training, advancement opportunities, benefits, working conditions, and personal or family demands. The survey will help identify home health aides’ priorities, ways to meet those priorities, and how to prevent staffing shortages in the future.

Why should I participate?

Our Nation is facing a major shortage of home health aides who provide for the long-term care needs of patients living at home and patients receiving hospice care. As “baby boomers” age, the need for long-term care will increase. The need for home health aides will also grow. But today, many home health aides are leaving and too few are entering the field.

We need to find out from home health aides about their work experiences and the challenges they face. This information will guide changes in policy and practice that can help attract new people to become home health aides. Without the voice of home health aides to help inform public policy and new programs, it is likely the shortage of home health aides will increase.

Therefore, your participation in the National Home Health Aide Survey is important; without your involvement, home health aides like you will not be included in the national description of home health aides who work in U.S. home health and hospice agencies.

Home health aides like you provide care to more than 2.2 million elderly and chronically ill people who receive care from approximately 10,000 home health and hospice agencies across the United States. We need to keep experienced, dedicated home health aides in the field and find new ways to attract more home health aides for the future.

Some of the important goals of the NHHAS are to provide a better understanding of:

  • What it is like to be a home health aide
  • Ways to improve the home health aids job
  • How to keep experienced people working in this important health care field
  • Ways to encourage others to become home health aides

Several national organizations support the NHHAS — including the

How was I selected?

Home health aides are selected from about 1,500 home health and hospice agencies participating in the National Home and Hospice Care Survey. About 6,000 home health aides will be chosen throughout the United States for this survey. Home health aides are randomly selected from a list of all home health aides employed by the home health and hospice agencies participating in the NHHAS. A sample of home health aides are selected from each agency. The home health aides selected from your agency represent your agency as well as other agencies of similar size in your geographic region.

Your participation makes the data more accurate. Your participation helps researchers, policy makers, and the home health and hospice industry understand the concerns of home health aides. Failure to participate in the survey lessens the accuracy of the information collected.

How do I know that the NHHAS is legitamate survey?

The National Home and Hospice Care Survey (NHHCS) has been in existence since 1992 with periodic national surveys conducted by the Centers for Disease Control and Prevention’s National Center for Health Statistics since that time. The NHHCS was developed in response to the rapid growth in the number of home health and hospice 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 evaluate the health status and services provided to patients and to find out whether there were enough agencies and staff to care for these patients. 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.

You can call this toll-free number, 1-888-290-1125, for more information about the National Home Health Aide Survey.

Is my information kept confidential?

The identity of all survey participants is kept strictly confidential. All information collected in this survey will be held in strict confidence according to law {section 308 (d) of the Public Service Act (42 United States Code 242m)}. By law, information that would identify you to anyone not connected with the survey cannot be released.

All information collected in this survey will be kept private, including your name and the agency where you work. No information will be given to your supervisor or agency. And your job or certification will not be affected.

We assign code numbers in place of names or other facts that could identify you. None of your answers will be reported in any way that identifies you personally. The survey results will only be released in summary tables and reports. No information collected in this survey may be used for any other purpose than the purpose for which it was collected. If any federal employee or contractor gives out confidential information not authorized by law, he or she can be fired and fined and/or imprisoned.

What is involved in participating?

After you are selected to participate in the survey, you will receive a package of information from the agency where you work. The package contains information about the survey and a token of appreciation for taking time to learn about the survey. To participate in the survey, please fill in your name and contact information on the postcard and mail it to us in the postage paid envelope or call the toll free number on the postcard to schedule a convenient time to participate in the survey.

After you contact us, an interviewer will call you to conduct the telephone interview. A survey representative will also attempt to call you for the interview, should we not hear from you. The interview will be scheduled during nonworking hours, at a time that is convenient for you.

The interview will take about 40 minutes and will include questions about your:

  • Training
  • Job history
  • Supervision
  • Wages and benefits
  • Other work-related issues

Examples of questions:

  • How did you learn about being a home health aide as a possible job?
  • If you had to decide whether to become a home health aide again, would you?
  • Is caring for others a reason why you continue to work in your current job?
  • Would you prefer to work more or fewer hours on this job, or is the amount of hours you work about right?
  • Does your current employer offer you paid sick leave?

After completing the interview, you will receive $30 in appreciation for participating in this important survey.

Who can I contact if I have additional questions?

To discuss any part of the National Home Health Aide Survey or to learn more about it, you can call this toll-free number, 1-888-290-1125. You can also ask to speak with representatives from the Federal agencies that sponsor this survey at (301) 458-4747.

Page last reviewed: November 6, 2015
Content source: National Center for Health Statistics