In June 2000, long-term care experts met to help guide the long-term care research agenda for the Agency for Healthcare Research and Quality (AHRQ). The meeting was cosponsored by AHRQ's Center for Organization and Delivery Studies and Center for Cost and Financing Studies.
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By William D. Spector, Thomas J. Shaffer, R. Tamara Hodlewsky, Jan J. De La Mare, and Jeffrey A. Rhodes
To help AHRQ develop its long-term care agenda on data collection, meeting participants were asked to provide advice on research priorities, identify quality measures and data gaps, and develop strategies on how to reduce these gaps.
The 2-day discussion was based on experts' responses to a series of questions collected prior to the meeting. Questions focused on research priorities, quality indicators, and adequacy of existing national databases.
On the first day of the meeting, participants listed their top research priorities concerning community-based long-term care. Their responses reflected a number of concerns in six major categories:
Three distinct populations of community-based long-term care users were identified:
Each of these populations has unique concerns—from dedicated disability measures for children to workplace issues for the adults with disabilities.
Four topics emerged as high priorities during the discussion:
The afternoon session focused on a discussion and recommendations for measuring quality of community-based services. The discussion had three goals:
Specific quality measure recommendations were hampered by the shortage of existing validated measures. No service-specific quality measures were provided other than a general recommendation to develop measures of satisfaction.
Participants recommended a number of global measures such as the percentage of persons who are institutionalized, the degree of unmet functional need, and percentage of caregivers expressing high levels of burden or stress. However, they emphasized the limitations of global measures because they are not directly linked to specific services provided. It is thus difficult to attribute changes in these measures to service delivery.
On the second day of the meeting, presenters highlighted major features of national long-term care surveys and administrative data systems and discussed data gaps and strategies for reducing them. During the afternoon, participants discussed other data topics. These included measuring unmet need in activities of daily living and instrumental activities of daily living, the collection of State-level data, and capturing transitions.
Experts provided many recommendations for filling research and national data gaps. The following list highlights these recommendations:
Current as of April 2002
Internet Citation:
Future Directions for Residential Long-Term Care Health Services Research: Summary. Agency for Healthcare Research and Quality, Rockville, MD. April 2002. http://www.ahrq.gov/research/futureltc00/
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