Notice: Request for Measures of Patient Experiences of Cancer Care

Federal Register: March 4, 2010 (Volume 75, Number 42)            
                  Page 9913-9914

AGENCY: Agency for Healthcare Research and Quality, HHS.

ACTION: Notice of request.

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: william.lawrence@AHRQ.hhs.gov. 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