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Butler M, Kane RL, Larson S, et al. Closing the Quality Gap: Revisiting the State of the Science (Vol. 7: Quality Improvement Measurement of Outcomes for People With Disabilities). Rockville (MD): Agency for Healthcare Research and Quality (US); 2012 Oct. (Evidence Reports/Technology Assessments, No. 208.7.)

  • This publication is provided for historical reference only and the information may be out of date.

This publication is provided for historical reference only and the information may be out of date.

Cover of Closing the Quality Gap: Revisiting the State of the Science (Vol. 7: Quality Improvement Measurement of Outcomes for People With Disabilities)

Closing the Quality Gap: Revisiting the State of the Science (Vol. 7: Quality Improvement Measurement of Outcomes for People With Disabilities).

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Topic Refinement

Topics for the Closing the Quality Gap Series were solicited from the portfolio leads at the Agency for Healthcare Research and Quality (AHRQ). The nominations included a brief background and context; the importance and/or rationale for the topic; the focus or population of interest; relevant outcomes; and references to recent or ongoing work. Investigators from the Minnesota Evidence-based Practice Center then refined the questions for this project in consultation with a Technical Expert Panel (TEP). The TEP consisted of experts in disability and rehabilitation research, outcome and performance measurement, risk adjustment and modeling, community based care and personal care services, and healthcare quality and quality improvement. (See the Acknowledgments section for a full listing of TEP members.)

Inclusion/Exclusion Criteria

In conducting our searches, we used the following inclusion criteria:

  • Physical, cognitive/intellectual, or developmental disabilities
  • All ages
  • Outcomes used to evaluate health services
  • Outpatient and community settings

Our exclusion criteria included:

  • Inpatient settings
  • Institutional settings
  • Severe mental illness
  • Psychotropic medications used in medical/service environments
  • Condition specific outcomes
  • Research for specific disability conditions

Care coordination was operationalized as comprehensive coordination programs consisting of multiple care coordination activities and components. Specifically, we included programs where there was some kind of purposeful coordination between/among (1) medical providers (e.g., generalists/specialists, school nurse/primary care, etc.), (2) medical providers and some community service providers (generally schools), (3) medical providers and caregivers (usually family), and (4) social service groups including some health component (e.g., helping ensure children with disabilities retain health and SSI benefits when aging out of youth services; this is not a frequent finding). Studies of single care coordination components were excluded.

The literature was limited in several ways. We limited the literature to peer-reviewed, English-language publications after 1990. Quality improvement as a field and the science of quality measurement had formed by this time, and the interest is in current measures in use. We also limited the literature to the United States and to the United Kingdom, Canada, Australia/New Zealand, and the Netherlands, where service delivery settings are more likely to be applicable to the United States. Cross-fertilization of ideas between these health care settings has not been noted. Other international settings, however, were unlikely to be applicable to the U.S. setting.


To keep the scope of the project feasible, we conducted a search of methods-related literature documenting the development and testing of outcome measures. Thus, the inclusion/exclusion criteria were further limited to only include articles examining the characteristics of generic, rather than condition-specific, measurement tools. Reviews, compendiums, or suggested outcome sets were included only if they represented a significant collaborative effort. A publication was deemed to have shown significant collaborative effort if it used replicable methods and multidisciplinary investigators to search for and critically appraise outcome measures, and the results were intended to help establish professional consensus, often through partnership with professional organizations.


For KQ1b, the search was narrowed to a list of basic medical service needs:

  • Preventive dental care
  • Preventive medical care (based on general recommendations of the U.S. Preventive Services Task Force)
  • Urinary tract infections
  • Pressure ulcers
  • Uncontrolled diabetes
  • Diabetes complications
  • Bacterial pneumonia
  • Asthma
  • Gastroenteritis
  • Hypertension
  • Obesity

Eligible study designs include RCTs and prospective studies that evaluate the efficacy of a treatment or program for any of the basic service needs or secondary conditions. We did not include studies of incidence, prevalence, or risk factors. To address the concept of a person with a disability as a patient with a potentially complicating condition but otherwise a segment of the general population, we looked for studies that enrolled both disabled and nondisabled populations for general population outcomes and how the study accounted for the possible mediating or moderating effects of the presence of disability.

Search Strategy

Published Literature

We searched MEDLINE, PsychINFO, ERIC, and CIRRIE through March 27, 2012. Search terms were grouped to capture the major constructs: populations of interest, literature related to methodological research, and relevant service settings. Searches were modified for each individual database by reference medical librarians. Search algorithms are available in Appendix A. We hand searched reference lists of relevant high-quality literature reviews. We also hand searched “Disability and Health” a journal dedicated to publishing health-related articles for disabled populations. The literature captured by the search algorithms were exported to EndNote software (Thomson Reuters, New York, NY) and screened by two independent reviewers using screening codes based on the inclusion/exclusion criteria. Conflicts were resolved by consensus with a third independent investigator.


We used key words and MeSH terms for disability populations. The results were cross searched with terms for measurement tool development.

KQs 1b and 1c

For subquestions 1b and 1c, we used the same key words and MeSH terms to perform individual searches for each basic medical service need and secondary condition, while filtering for experimental research.

We also conducted several ad hoc searches, due to difficulty finding relevant literature.

We cross-searched all the basic medical service needs by the MeSH term “ADL” to isolate literature in MEDLINE expected to show differentiation based on one common measure of disability severity.

We searched MEDLINE by MeSH terms for developmental/intellectual disabilities to isolate a specific disability population and cross-searched with terms for obesity, diabetes and congestive heart failure. The obesity search was restricted to year 2000 to current for manageable screening. Six articles for obesity met the inclusion criteria and were abstracted.

KQs 2 and 3

We used the MeSH terms for KQ1 to identify the populations. We cross searched results with the care coordination terms related to the various quality improvement strategies often used in care coordination.1

Grey Literature

We searched the grey literature for monographs, white papers, and other high-quality sources of material on measurement tools using the New York Academy of Medicine Grey Literature Report, and Web sites such as the CDC Web site. Grey literature was limited to measurement tools that are in active use by important end users, such as health systems or tools with established psychometric properties. (See Appendix A for grey literature source details.)

Data Management, Extraction, and Synthesis

The included literature was maintained in an EndNote bibliography. Relevant data points related to population covered, descriptions and development of the measurement tool, type of quality improvement research for which the tool was used, and data sources, was abstracted to standardized Excel spreadsheets (Microsoft Corporation, Redmond, WA). An outcome measurement tool was described within only one article, unless multiple articles evaluated multiple outcomes with overlap. Only the outcome being tested was abstracted. Measures used in psychometric testing for validity were not abstracted. We used qualitative techniques to synthesize the literature. We used the ICF as an analytic framework where possible. However, classifying measures by matching items to the ICF checklist was beyond the scope of this review. We did not impose a single disability classification scheme but rather noted the disability classifications used in the literature.


As noted above, we addressed, where the literature was available, the differences in the findings for various subgroups such as age or type of disability.

Peer Review, Public Commentary, and Technical Expert Panel

Experts in disability and rehabilitation research and policy, outcome and performance measurement, community based and personal care services, and healthcare quality and quality improvement fields and individuals representing stakeholder and user communities were invited to provide external peer review of this systematic report; AHRQ and an associate editor also provided comments. See the Acknowledgments section for a full listing of peer reviewers. The draft report was posted on the AHRQ Web site for 4 weeks to elicit public comment. Public comments were received from the American Academy of Physical Medicine and Rehabilitation, the American Physical Therapy Association, and the American Occupational Therapy Association. We addressed all reviewer comments, revising the text as appropriate, and documented everything in a disposition of comments report that will be made available 3 months after the Agency posts the final systematic review on the AHRQ Web site.


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