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Request for Measures of Patients' Hemodialysis Care Experiences

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Agency for Healthcare Research and Quality (AHRQ), HHS.


Notice of request.


The Agency of Healthcare Research and Quality (AHRQ) is soliciting the voluntary submission of instruments measuring patient perspectives of their experience with hemodialysis facilities from researchers, vendors, stakeholders and other interested parties. AHRQ and the Centers for Medicare & Medicaid Services (CMS) have set as a priority the development of a standardized survey that may be used to make widely available, comparable measurements of hemodialysis patient experiences. Therefore, AHRQ is assessing the feasibility of creating such a standardized instrument and the nature and scope of the work to be done. As part of the feasibility study, AHRQ is reviewing existing instruments that capture patients' treatment experiences and is therefore requesting voluntary submission of such instruments or measures along with documentation for administration of the instruments or measures and, if possible, critical evaluations of particular measures or related survey administration techniques.


Parties interested in contributing to this endeavor are asked to submit the requested material on or before October 24, 2003 to Beth Kosiak, Ph.D. (see address below). AHRQ will not reply to individual responses, but will consider all submissions and suggestions.


Submissions should include a brief cover letter and include copy of the instrument or particular measure(s) for consideration. They may be in the form of a letter or e-mail, preferably with an electronic file in a standard word processing format such as Microsoft Word or Word Perfect on a 31/2 inch diskette enclosed or as an e-mail with an e-mail attachment. Electronic submissions are strongly encouraged. Responses to this request should be submitted to: Beth Kosiak, PhD, Agency for Healthcare Research and Quality, 540 Gaither Road, Rockville, MD 20850, Phone: (301) 427-1322, Fax: (301) 427-1341, e-mail:

In order to ease the handling of submissions, please send a copy of the instrument or measure(s), and a cover letter addressing the extent to which the information submitted meats the “Submission Criteria” below. 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 article appears. All submissions must include a statement of willingness to grant to AHRQ the right to use and authorize others to use submitted measures and their documentation as part of a CAHPS®-trademarked instrument. Any CAHPS instrument developed for patient perspectives of experiences of hemodialysis care will be made publicly available for use free of charge. However, a CAHPS instrument bearing the CAHPS trademark may only be administered following CAHPS documentation and instructions. To facilitate our obtaining any other required clarifications, please submit the following information with respect to a knowledgeable contact person: (a) Name, (b) title, (c) organization, (d) Start Printed Page 51018mailing address, (e) telephone number, and (f) e-mail address. For clarity, please do not use acronyms without explanation..

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Beth Kosiak, PhD, from the Center for Quality Improvement and Patient Safety, Agency for Healthcare Research and Quality (see contact information above).

Submission Criteria

Measures submitted should ideally reflect these elements to be considered: (a) They must capture the patients' perspective on their experience of care in hemodialysis settings; (b) have a high degree of reliability and validity; and (c) have been used widely, not just in one or two research studies or local dialysis settings. It is recommended that submitters provide documentation that the instrument(s) or measure(s) they submit meets these criteria. The following information, if available, should be included in the submission of materials: the name of the instrument, domains assessed, language(s) in which the instrument is available, evidence of cross group/cultural comparability if any, examples of uses of the instrument for quality assessment or improvement, scale, psychometric statistics, such as individual level reliability (e.g., internal consistency, test-retest), group level reliability, item response theory (IRT) statistics, validity (content, construction, criterion), as well as cognitive interviews and field test results, and details about focus groups.

Submitters are also encouraged to submit recommendations regarding, and any evaluations of, administration protocols, including recommended patient contact procedures, recommended sample sizes, mode of administration, any information available about mode effects, and mode specific response rates. Evidence of the criteria may be demonstrated by providing peer-reviewed journal article(s) or citations thereof.

As noted above submitters must indicate a willingness to grant to AHRQ the right to use and authorize others to use the submitted instrument or particular measures or formats therein. The license or assignment of rights will make it possible to apply the CAHPS trademark to a new instrument combining the best features of all the submissions as well as any ideas that may develop from reviewing them. AHRQ will not simply adopt one instrument and apply the CAHPS trademark to it. Rather, AHRQ, in collaboration with its CAHPS grantees, will evaluate all submitted instruments and measures, select several, either in whole or in part, for testing, or more likely devise one or more for testing and, as required, make additional modifications for the final product. AHRQ will assume responsibility for the final measure set as well as any further modifications to the developed instruments. Sources used in developing the final product will be acknowledged by AHRQ in the appropriate forum. In addition, all submissions will be publicly reported in aggregate.

The finalized instrument will bear the CAHPS trademark. As indicated above, it will be made freely available for use by all interested parties. There will be free access to the instrument's supportive/administrative information as well, and as a matter of quality control, there will be warnings that the CAHPS identification may not be used if any changes are made of the instrument or final measure set, without review and permission of the agency. AHRQ will assume responsibility for the final measure set as well as any further modifications to the developed instrument.

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The Agency for Healthcare Research and Quality has been a leading proponent and supporter of the development of instruments for measuring patient experiences within the healthcare system of the United States. Through prior CAHPS patient survey development efforts such as the Consumer Assessment of Health Plan CAHPS®, AHRQ has been able to provide valuable information to consumers and purchasers alike. While the Health Plan CAHPS® tool is highly regarded within the industry and provides valuable information to consumers and purchasers, it does not address hemodialysis patient experiences of care.

Leaders in the healthcare sector have called for a response to this pressing need. In “Crossing the Quality Chasm”, the National Institute of Medicine (IOM) established patient-centered care as one of the industry's six aims for quality improvement. The dimensions of patient-centered care include: Respect for patients' values, preferences, and expressed needs; coordination and integration of care; information, communication, and education; physical comfort; emotional support, i.e., relieving fear and anxiety; involvement of family and friends (2001). From past experience, AHRQ suggests the addition of two more aims for quality improvement: Continuity and transition; and access to care. To measure these dimensions will require a standardized instrument that produces reliable and valid results.

In an effort to address the concerns of the industry, the Director AHRQ and the Administrator of CMS have established a priority to develop a standardized measure of hemodialysis patients' experiences. The goal of developing the standardized survey and reporting quality data on hemodialysis facilities could be reached within the next few years.

The steps to advance this initiative include:

  • Stakeholder and Technical Expert Panel Meetings: A series of meetings will be held to identify the issues, concerns and interests of the healthcare community. Summaries of these meetings will be posted on the AHRQ Website:​.
  • Feasibility Study: The process to access the feasibility of developing a national standardized survey instrument to measure patient experiences with hemodialysis care. As part of the study, the potential uses of the instrument such as quality improvement, public reporting, or both will be assessed.
  • Research Plan: The process by which measures will be defined and applicable instruments identified. Instruments submitted will be evaluated to determine if they meet the measurement needs and to identify whether additional measure development is required. The standardized instrument will reside in the public domain.
  • Implementation Plan: A process to implement the standardized survey will be established to include information related to data collection, analysis, and reporting.
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Dated: August 14, 2003.

Carolyn M. Clancy,


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[FR Doc. 03-21555 Filed 8-22-03; 8:45 am]