[Federal Register Volume 75, Number 42 (Thursday, March 4, 2010)]
[Notices]
[Pages 9913-9914]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2010-4387]
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DEPARTMENT OF HEALTH AND HUMAN SERVICES
Agency for Healthcare Research and Quality
Request for Measures of Patient Experiences of Cancer Care
AGENCY: Agency for Healthcare Research and Quality, HHS.
ACTION: Notice of request.
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SUMMARY: The Agency for Healthcare Research and Quality (AHRQ), in
collaboration with the National Cancer Institute (Nd), is soliciting
voluntary submission of survey instruments and items, which ask adult
survey respondents to assess the care delivered by cancer care
providers. AHRQ is seeking these items and measures from researchers,
survey firms, cancer care providers, patient advocacy groups,
individual cancer patients, and other stakeholders who are interested
in the development of survey measures of patient experiences of cancer
care. To be as inclusive as possible, AHRQ is requesting such
instruments and individual items, along with any available
documentation of their validity and reliability and descriptions of
survey methods for using them.
Organizations can submit items for use in either or both of the two
related initiatives to develop measures of the experience with cancer
care. The first initiative will focus on identifying items and survey
instruments that can be used by AHRQ as candidate items for a
standardized instrument to measure patient assessment of cancer care.
The ultimate goal of this process is to develop and test a survey that
will be part of the CAHPS family of survey instruments. Submitters of
items sent in response to this announcement and subsequently
incorporated into the CAHPS[supreg] Survey for Cancer Care will be
acknowledged in explanatory material accompanying the survey instrument
and published on the CAHPS[supreg] Web site (https://www.cahps.AHRQ.gov). The instrument will be made available to the
public under the CAHPS[supreg] trademark to encourage both widespread
use and uniformity of criteria by which cancer care providers can be
compared by consumers and others. Organizations that field
CAHPS[supreg] Surveys with the trademarked CAHPS[supreg] name on them
are required to follow all implementation and reporting instructions
set out on the CAHPS[supreg] Web site.
The second initiative will focus on the identification of items for
use in a new tool being developed to measure Patient Centered
Communication (PCC) in cancer care. While both initiatives are related
to the patient care experience, the PCC instruments will focus
primarily on elements of the communication between patients and
clinicians throughout the spectrum of cancer care (i.e., exchanging
information, fostering healing relationships, managing uncertainty,
recognizing and responding to emotions, making decisions, and enabling
self-management and patient navigation through the care continuum) as
cited in Epstein & Street (Epstein RM, Street RL Jr. Patient Centered
Communication in Cancer Care: Promoting Healing and Reducing Suffering.
National Cancer Institute, NIH Publication No. 07-6225. Bethesda, MD,
2007). Submitters of items sent in response to this announcement and
subsequently incorporated into the PCC instruments will be acknowledged
in explanatory material accompanying the survey instruments and
published on the NCI Web site (http://outcomes.cancer.gov/areas/pcc/).
In addition to the patient perspective on the care they receive,
the PCC instruments will address communication from the perspective of
the treating clinicians.
AHRQ will consider all submitted instruments and items for
inclusion in the final survey instruments under development. Submitters
will not be identified with specific items in the final instrument, but
will be included in a list of those who contributed candidate
instruments and items if so desired. Please include a statement with
your submission indicating whether or not you wish to be identified as
a contributor.
DATES: Please submit instruments and supporting information to Dr.
William Lawrence (see address below) on or before April 2, 2010.
ADDRESSES: Submissions should include a brief cover letter, a copy of
the instrument or items for consideration and supporting information as
specified under ``Submission Criteria'' below. Submissions may be in
the form of a letter or e-mail, preferably with an electronic file in a
standard word processing format on a CD or as an e-mail attachment.
Electronic submissions are encouraged. Please do not use acronyms
unless clearly defined. Responses to this request should be submitted
to: Dr. William Lawrence, Agency for Healthcare Research and Quality,
540 Gaither Road, Rockville, MD 20850, Phone: (301) 427-1517, Fax:
(301) 427-1520, E-mail: [email protected]. To facilitate
handling of submissions, please include full information about the
instrument developer, any copyright holder and person to contact: (a)
Name, (b) title, (c) organization, (d) mailing address, (e) telephone
number, (f) fax number, and (g) e-mail address. A copy or citation of
relevant peer-reviewed journal articles is also desirable, but not
required. For citations, please include the title of the article,
author(s), publication year, journal name, volume, issue, and page
numbers where the article appears and/or other applicable evidence to
support the value of the instrument or items for measuring patients'
experience (or the clinicians experience for the PCC initiative) of
cancer care.
All submissions must include a written statement granting AHRQ the
right to use and authorize others to use the submitted instruments,
items, and their documentation for the above-described purposes. Thus,
this statement must indicate whether you are interested in submitting
the items or instruments for use in the first initiative (CAHPS[supreg]
Survey for Cancer Care), the second initiative (PCC Surveys), or both.
This statement must be signed by an individual authorized to act for
any holder of copyright on each submitted measure or instrument. The
authority of the signatory to provide such authorization should be
described in the letter. Submitters' willingness to grant to AHRQ the
right to use and authorize others to use their instruments, items, and
measures means that AHRQ will have a license to grant free access and
rights to use all elements of the early and final versions of the
CAHPS[supreg] and/or PCC instruments, in accordance with the
instruments' supporting administration information and instructions.
FOR FURTHER INFORMATION CONTACT: William Lawrence, MD, MS, from the
[[Page 9914]]
Center for Outcomes and Evidence, Agency for Healthcare Research and
Quality, (please see contact information above).
Submission Criteria
The survey development teams are interested in instruments and
items through which cancer patients can assess the care they receive
from providers as well as the providers' communication skill. They are
also interested in instruments and items through which clinicians can
assess delivered care or communication. In addition to survey items and
instruments, the development teams are interested in observational
measures and their associated scoring systems. AHRQ, in collaboration
with experienced investigators, will evaluate all submitted instruments
and items. Instruments and items may be adopted verbatim, in whole or
in part, or may be modified. AHRQ will assume responsibility for the
final measure sets as well as any future modifications to either
survey.
Each voluntary submission should include the following related
descriptive information, to the extent that it is available:
The name of the instrument (or observational measure);
Domain(s) or key concepts covered in the survey;
Language(s) in which the instrument is available;
Evidence of cultural/cross group comparability;
Cognitive screening or assessments used and cognitive
testing results;
Method of selection of respondent (i.e., patient) or
patient representative or spokesperson (i.e., most appropriate family
member/significant other, if more than one available);
Response rates;
Cost estimates for data collection;
Instrument reliability (internal consistency, test-retest,
etc.);
Validity (content, construct, criterion-related);
Methods and results of field-testing; and,
Description of sampling strategies and data collection
protocols, including such elements as mode of administration, informed
consent materials, use of advance letters, timing and frequencies of
contacts;
For the PCC initiative, indicate whether the instrument
(or observational measure) is designed for use with patients or
clinicians, as well as a statement indicating whether or not the
submitter wishes to be acknowledged when the instrument is published on
the NCI Web site.
In addition, a description of how extensively the survey has been
fielded should also be included in the submission materials. Measures
that have been tested or implemented in just one or two research
studies would have more limited value than those tested or implemented
more widely, but measures will be considered on an individual basis
when evaluating the measures needing further testing as a prerequisite
to their inclusion in CAHPS[supreg] or PCC draft and final survey
tools.
Submission of copies of existing report formats developed to
disclose findings to consumers and providers is desirable, but not
required. Additionally, information about existing database(s) for the
instrument(s) submitted is helpful, but not required for submission.
Evidence of meeting the validity, reliability, and other criteria may
be demonstrated through submission of peer-reviewed journal article(s)
or through the best evidence available at the time of submission.
SUPPLEMENTARY INFORMATION:
Background
AHRQ is a leader in developing and testing instruments for
quantitative measurement of consumer experience within the healthcare
system of the United States as evidenced by the development and
widespread use of CAHPS[supreg] survey products. The Consumer
Assessment of Healthcare Providers and Systems (CAHPS[supreg]) program
is a public-private initiative to develop standardized surveys of
patient experience of care received in ambulatory and facility
settings. Standardization of measures is essential for meaningful
comparison of performance across providers and settings. While
CAHPS[supreg] instruments have been highly regarded within the industry
and provide valuable information, until now, no CAHPS[supreg]
condition-specific surveys have been developed. Use of a standardized
measurement instrument for cancer care will provide several benefits
including: Comparable information across cancer care providers for the
public about the quality of care; data-based recommendations for
quality improvement efforts and a data base to stimulate further
research in this area. AHRQ, through a collaborative process with NCI
and other stakeholders, has initiated the process for this project.
The steps to advance this initiative are described below:
Survey Development and Testing: The process by which
measures will be defined and the most useful instruments or measures
identified is as follows: Instruments submitted will be evaluated by
the project team in consultation with AHRQ and NCI staff to determine
if they meet high priority or common measurement needs and to identify
whether additional measure development is required. Additional measure
development will be done as needed.
Until the trademarked versions or each instrument are available,
access to and use of draft versions will require explicit written
permission from AHRQ and sharing of testing results with the
CAHPS[supreg] team. testing
Implementation Plan: The final tools and a description of
the survey process as well as instructions for implementing of the
final standardized CAHPS[supreg] and PCC cancer care instruments will
be made available at no cost to the public on AHRQ and NCI Web sites
and will include requirements and information related to their use in
future data collections, analysis, and public reporting.
Dated: February 16, 2010.
Carolyn M. Clancy,
Director, AHRQ.
[FR Doc. 2010-4387 Filed 3-3-10; 8:45 am]
BILLING CODE 4160-90-M