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[Federal Register Volume 78, Number 17 (Friday, January 25, 2013)]
[Notices]
[Pages 5458-5459]
From the Federal Register Online via the Government Printing Office [www.gpo.gov]
[FR Doc No: 2013-01299]

[[Page 5458]]

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DEPARTMENT OF HEALTH AND HUMAN SERVICES

Centers for Medicare & Medicaid Services

[CMS-4172-NC]

Medicare Program; Request for Information To Aid in the Design 
and Development of a Survey Regarding Patient and Family Member/Friend 
Experiences With Hospice Care

AGENCY: Centers for Medicare & Medicaid Services (CMS), HHS.

ACTION: Request for information.

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SUMMARY: This document is a request for information regarding patient 
and family member or close friend experiences with hospice care.

DATES: The information solicited in this notice must be received at the 
address provided below by March 26, 2013.

ADDRESSES: In responding to this solicitation please reply via email to 
HospiceSurvey@cms.hhs.gov or by postal mail at Centers for Medicare and 
Medicaid Services, Attention: Debra Dean-Whittaker, Mailstop C1-25-05, 
7500 Security Boulevard, Baltimore, MD 21244-1850.

FOR FURTHER INFORMATION CONTACT: Debra Dean-Whittaker, 410-786-0848

SUPPLEMENTARY INFORMATION:

I. Background

    In accordance with section 3011 of the Affordable Care Act, the 
Department of Health and Human Services (HHS) developed the National 
Quality Strategy to create national aims and priorities to guide local, 
state, and national efforts to improve the quality of health care. The 
National Quality Strategy established three aims supported by six 
priorities.
    The three aims are as follows:
     Better Care: Improve the overall quality, by making health 
care more patient-centered, reliable, accessible, and safe.
     Healthy People/Healthy Communities: Improve the health of 
the U.S. population by supporting proven interventions to address 
behavioral, social, and environmental determinants of health in 
addition to delivering higher-quality care.
     Affordable Care: Reduce the cost of quality health care 
for individuals, families, employers, and government.
    The six priorities are: ``(1) Making care safer by reducing harm 
caused by the delivery of care; (2) ensuring that each person and 
family are engaged as partners in their care; (3) promoting effective 
communication and coordination of care; (4) promoting the most 
effective prevention and treatment practices for the leading causes of 
mortality, starting with cardiovascular disease; (5) working with 
communities to promote wide use of best practices to enable healthy 
living; and (6) making quality care more affordable for individuals, 
families, employers, and governments by developing and spreading new 
health care delivery models.''
    The survey, now under development, hereinafter referred to as the 
``Hospice Survey'' supports the National Quality Strategy goal of 
Better Care and the priorities of--
     Ensuring that each person and family are engaged as 
partners in their care (priority 2); and
     Promoting effective communication and coordination of care 
(priority 3).
    The Centers for Medicare & Medicaid Services (CMS) has previously 
implemented national surveys called Consumer Assessment of Healthcare 
Providers and Systems (CAHPS[supreg]) surveys in both in-patient and 
out-patient settings and for different services. Specifically, CMS has 
implemented CAHPS[supreg] surveys for Medicare health and drug plans, 
inpatient hospitals, and home health agencies. CMS and the Agency for 
Healthcare Research and Quality (AHRQ) have also developed 
CAHPS[supreg] surveys for in-center hemodialysis facilities, nursing 
homes, and clinician and group practices. None of these CAHPS[supreg] 
surveys address experiences with hospice services.
    Hospice focuses on caring for patients at the end of their lives 
and on helping their families. In the Federal Register we have defined 
hospice and hospice care as follows:
    Hospice means a public agency or private organization or 
subdivision of either of these that is primarily engaged in providing 
hospice care as defined in this section.

    Hospice care means a comprehensive set of services described in 
section 1861(dd)(1) of the Act, identified and coordinated by an 
interdisciplinary group to provide for the physical, psychosocial, 
spiritual, and emotional needs of a terminally ill patient and/or 
family members, as delineated in a specific patient plan of care.\1\
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    \1\ 42 CFR 418.3 Accessed November 19, 2012 http://www.gpo.gov/fdsys/pkg/CFR-2011-title42-vol3/xml/CFR-2011-title42-vol3-part418.xml#seqnum418.3.

    The Hospice Foundation of America is one of many private 
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organizations that agree with the following statement:

    Hospice is a special concept of care designed to provide comfort 
and support to patients and their families when a life-limiting 
illness no longer responds to cure-oriented treatments.\2\
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    \2\ Hospice Foundation of America, accessed November 2, 2012 
http://www.hospicefoundation.org/whatishospice.

    The National Hospice and Palliative Care Organization (NHPCO), a 
leading organization for hospice providers, describes hospice care as 
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follows:

    The focus of hospice relies on the belief that each of us has 
the right to die pain-free and with dignity, and that our loved ones 
will receive the necessary support to allow us to do so.\3\
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    \3\ Caring Connections, accessed November 1, 2012 http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3356.

    The planned CMS Hospice Survey differs from other CMS patient 
experience surveys because the target population for the Hospice Survey 
is bereaved family members or close friends of patients who died in 
hospice care. The reasons for focusing on family members/friends are 
that the patient is not the best source of information for the entire 
trajectory of hospice care, and that many hospice patients are very ill 
and unable to answer survey questions.
    Given the unique environment and patient population of hospice 
care, existing patient experience instruments designed for other 
settings are only partially relevant for capturing hospice care 
experiences. A rigorous, well-designed Hospice Survey will allow us to 
understand: (1) Patient experiences throughout their hospice care, as 
reported by their family members/friends; and (2) the perspectives of 
family members/friends with regard to their own experiences with 
hospice. This information will ultimately be used to help improve the 
quality of care patients and their families and friends receive in 
hospice.
    We are in the process of reviewing potential topic areas, as well 
as publicly available instruments and measures, for the purpose of 
developing a Hospice Survey that will enable objective comparisons of 
hospice experiences across the country. This survey will be used to 
help consumers make more informed decisions about providers, as well as 
provide information to drive improvements in the quality of hospice 
care. The principal focus of this effort is to develop a survey of 
family members or friends who are 18 years of age and older and who are 
knowledgeable about the care provided to the person enrolled in 
hospice.

II. Solicitation of Information

    We are soliciting the submission of suggested topic areas (such as 
``communication with providers,'' ``pain

[[Page 5459]]

control'' or ``non-pain symptom management,'' as well as publicly 
available instruments for capturing family members' or friends' 
experiences with hospice care. We are interested in instruments and 
items that can measure quality of care from the family member/friend's 
perspective, including all potential hospice settings (for example, 
home, nursing home, hospital, and free-standing hospice) and 
instruments that track changes over time.
    We are looking for suggested topic areas and publicly available 
instruments in which the information was identified by family members/
friends as important to them in evaluating hospice care. Existing 
instruments are preferred if they have been tested, have a high degree 
of reliability and validity, and report evidence of wide use.
    The following information would be especially helpful in any 
comments responding to this request for information:
     A brief cover letter summarizing the information requested 
for submitted instruments and topic areas, respectively, and how the 
submission will help fulfill the intent of the survey.
     (Optional) Information about the person submitting the 
material for the purposes of follow up questions about the submission 
which includes the following:

++ Name.
++ Title.
++ Organization.
++ Mailing address.
++ Telephone number.
++ Email address.
++ Indication that the instrument is publicly available.

     When submitting topic areas, we encourage including to the 
extent available the following information:
++ Detailed descriptions of the suggested topic area(s) and specific 
purpose(s).
++ Relevant peer-reviewed journal articles or full citations.

     When submitting publicly available instruments or survey 
questions, we encourage including to the extent available the following 
information:

++ Name of the instrument.
++ Copies of the full instrument in all available languages.
++ Topic areas included in the instrument.
++ Measures derived from the instrument.
++ Instrument reliability (internal consistency, test-retest, etc) and 
validity (content, construct, criterion-related).
++ Results of cognitive testing (one-on-one testing with a small number 
of respondents to ensure that they understand the questionnaire.)
++ Results of field testing.
++ Current use of the instrument (who is using it, what it is being 
used for, what population it is being used with, how instrument 
findings are reported, and by whom the findings are used).
++ Relevant peer-reviewed journal articles or full citations.
++ CAHPS[supreg] trademark status.
++ National Quality Forum (NQF) endorsement status.
++ Survey administration instructions.
++ Data analysis instructions.
++ Guidelines for reporting survey data.
    CMS is developing this survey and plans to submit it to AHRQ for 
recognition as a Consumer Assessment of Healthcare Providers and 
Systems (CAHPS[supreg]) survey. The survey will be developed in 
accordance with CAHPS[supreg] Survey Design Principles and 
implementation instructions will be based on those for CAHPS[supreg] 
instruments (https://www.cahps.AHRQ.gov/About-CAHPS/Principles.aspx).

(Catalog of Federal Domestic Assistance Program No. 93.773, 
Medicare--Hospital Insurance; and Program No. 93.774, Medicare--
Supplementary Medical Insurance Program)

    Dated: December 5, 2012.
Marilyn Tavenner,
Acting Administrator, Centers for Medicare & Medicaid Services.
[FR Doc. 2013-01299 Filed 1-24-13; 8:45 am]
BILLING CODE 4120-01-P
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