05-5436. Request for Measures of Healthcare Experiences of People With Mobility Impairment

AGENCY:

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

ACTION:

Notice of request for measures.

SUMMARY:

The Agency for Healthcare Research and Quality (AHRQ), with the support of the Centers for Disease Control and Prevention (CDC) of the U.S. Department of Health and Human Services and the National Institute on Disability and Rehabilitation Research (NIDRR) of the U.S. Department of Education are soliciting the submission of instruments or items that measure the quality of healthcare experienced by people with mobility impairment. The instruments or items will be considered for inclusion in a CAHPS® survey of people with mobility impairment (PWMI). Items or survey instruments may be submitted from researchers, health plans, other health care providers, disability organizations, stakeholders, vendors and other interested parties. This initiative is in response to suggestions from a significant number of stakeholders to develop a CAHPS® tool that measures the quality of care as perceived by adults with disabilities, and to provide performance data to health plans and others that are actionable for quality improvement and access. Our response to stakeholder requests will ultimately provide users with a flexible survey tool to assess the quality of healthcare services for adults with disabilities across multiple settings. The focus of this initial project will be only on people with mobility impairments, and subsequent survey projects may focus on other aspects of disability.

Many questions in the existing CAHPS instruments address concerns of people with mobility impairments, including access, communication, courtesy and respect, and shared decision-making. We are particularly interested in identifying and considering new content areas, new response categories and scales for existing questions, and revised wording or question order to make existing questions disability-appropriate.

DATES:

Please submit instruments or items and supporting information on or before May 20, 2005. AHRQ will not respond individually to submitters, but will consider all submitted instruments and items, and publicly report the results of the review of the submissions in aggregate.

ADDRESSES:

Submissions should include a brief cover letter, a copy of an instrument or items for consideration, and supporting statements and information as specified under the submission criteria below. Submissions may be in the form of a letter or e-mail, preferably as an electronic file with an e-mail attachment. Electronic submissions are strongly encouraged. Responses to this request should be submitted to: Marybeth Farquhar, RN, MSN, Agency for Healthcare Research and Quality, 540 Gaither Road, Rockville, MD 20850, phone: [phone], Fax: [phone], e-mail: [e-mail].

To facilitate handling of submissions, please include full-information about the instrument developer or contact person: (a) Name, (b) title, (c) organization, (d) mailing address, (e) telephone number, (f) fax number, and (g) e-mail address. Also, please submit with a copy of the instrument or items for consideration, evidence that it/they meet(s) the criteria set out under the Submission Criteria section below. Please do not use acronyms in your submissions.

Submitters musts also provide 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 new or revised CAHPS®-trademarked instrument. The new CAHPS® instrument for people with mobility impairments will be made publicly available, free of charge.

FOR FURTHER INFORMATION CONTACT:

Marybeth Farquhar, RN, MSN, Center for Quality Improvement and Patient Safety, Agency for Healthcare Research and Quality, 540 Gaither Road, Rockville, MD 20850; phone [phone]; Fax: [phone]; e-mail: [e-mail].

Submission Criteria

Instruments submitted should focus on health care for the functions listed below, as well as any other quality domains that are indicated by the field to be important for people with mobility impairments. The following are provided as examples of areas of interest; however, items or tools reflecting additional domains are also welcome.

• Care coordination between providers or sites of care for people with mobility impairments;
• Shared decision-making or consumer involvement in decision-making about health care options and treatment.
• Culturally appropriate and disability sensitive care or care that tries to meet the cultural and linguistic needs of consumers including those using augmentative communication devices.
• Availability of information from the health plan in suitable alternative formats to promote consumer decision-making about health care options, treatment and access;
• Availability and usability of plan-level information in alternative formats on benefits, coverage, out-of-pocket cost to consumers, and how to file grievances/appeals;
• Availability and usability of consumer information from the health plan that identifies and compares accessible and disability-literate providers;
• Availability and usability of consumer information from the health plan to assist consumers in the selection of individual clinician (primary care or specialist) or treatment programs (e.g., pain management, skin breakdown clinics, or condition-sepcific clinics such as multiple sclerosis or post-polio); and,
• Helpfulness of health plan call center staff and customer service staff.

Measures submitted should meet these criteria to be considered: Capture the quality of care as experienced by people with mobility impairments; demonstrate a high degree of reliability and validity across different conditions leading to different degrees of mobility impairment; and have been used widely, not just in one or two research studies.

Submitter's willingness to grant to AHRQ the right to use and authorize others to use the instrument means that the CAHPS® trademark will be applied to a new instrument combining the best features of all the submissions as well as any ideas that may be developed in the course of reviewing them. Free access to any final CAHPS instrument(s) for people with mobility impairment, and free access to the instrument's supportive/administrative information is important to permit widespread use of a uniform tool. Thus, submitters of items that may be incorporated in the new CAHPS-PWMI supplement will be required to permit such universal free access to and use of, their incorporated item(s). However, item ownership will be protected during testing of the new CAHPS-PWMI surveys. AHRQ, in collaboration with NIDRR, CDC, and the expert CAHPS grantees, will evaluate all submitted instruments or items, and select one or more either in whole or in part for testing and, if required, modification. AHRQ will assume responsibility for the final instruments as well as any future modifications.

The final instruments will bear the CAHPS® trademark and they will be made freely available for use by all interested parties. Submitters will relinquish exclusive control of any items that appear in the final instrument. As a matter of quality control there will be warnings that CAHPS® identification may not be used if any changes are made to the instrument or final measure set without review and permission of the Agency.

Each submission should include the following information:

• The name of the instrument;
• Whether the instrument/item(s) is disease or condition specific;
• Domain(s) of the instrument/items;
• Language(s) in which the instrument/item(s) is available;
• Evidence of cultural/cross group comparability, if any;
• Instrument reliability (internal consistency, test-retest, etc.);
• Validity (content, construct, criterion-related);
• Response rates;
• Methods and results of cognitive testing and field-testing;
• Description of sampling strategies and data collection protocols, including such elements as mode of administration, use of advance letters, timing and frequencies of contacts;
• A list of where the instrument has been fielded and at what level it has been and/or is being used; and
• Evidence addressing the criteria should be demonstrated through submission of peer-reviewed journal article(s) or through the best evidence available at the time of submission. Citation of peer-reviewed journal article(s) pertaining to the instrument or item(s) include the title of the article, author(s), publication year, journal name, volume, issue, and page numbers where article appears, may be included but are not required.

Submission of copies of existing report formats developed to provide findings to consumers and providers is desirable, but not required. Additionally, information about existing database(s) for the instrument(s) submitted is helpful, but also not required for submission.

SUPPLEMENTARY INFORMATION:

Background

Public and private organizations are surveying consumers to collect information on access to care, use of health services, health outcomes, and patient satisfaction. The results of these surveys are being used by: Consumers to inform their choices about health care plans; purchasers to assess the value of the services they buy; and health insurers, quality managers and policy makers, to plan programs and services. The original CAHPS Request for Applications (RFA) broadly defined the future direction of the CAHPS initiative including the development of a core health plan survey and additional modules to obtain assessment data from a variety of consumers including high users of health care services, such as the chronically ill, those suffering severe acute episodes of illness, and persons with disabilities.

Rationale for developing a CAHPS-PWMI includes:

• Persons with disabilities on average need both more health services as well as more complex services than persons without disabilities. It is important for providers, payers, purchasers and other stakeholders to understand what these needs are so that they can be met more appropriately.
• Information about health plan and health care deficits ins an important step in quality improvement for all consumers. Because they are on average higher users of care and often use a large variety of services, persons with mobility impairments are likely to identify important plan deficits that may be evident to consumers without disabilities.
• More persons with mobility impairments are being offered complex choices about both health plan options and health care quality.

In CAHPS II, we are focusing on a single type of impairment, specifically mobility impairments, which can be used as a starting point for development. We define “mobility impairment” as a functional impairment of the lower limbs. Some health care needs of people with and without mobility impairments are similar; for example, everyone needs preventive screening services and counseling about healthy behaviors. Mobility impairments severe enough to require an assistive device usually stem from a condition requiring additional preventive and specialized health care needs such as examining tables that can be adjusted for easy transfer, and accessible diagnostic equipment and rest rooms. The mobility impairment may be accompanied by upper limb mobility impairments, chronic pain, impaired cognition, and/or behavioral co-impairments such as anxiety or depression. Consequently even though initially we are directly addressing the specific needs of people with mobility impairments, we will also be indirectly addressing the needs of people with other types of impairments.

Dated: March 10, 2005.

Carolyn M. Clancy,

Director.