Future Directions for Community-Based Long-Term Care Health Services Research

Summary

Expert Meeting, June 20-21, 2000

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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.

Discussions

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:

1. Organization and delivery.
2. Equity/access.
3. Financial and market incentives.
4. Consumer issues.
5. Quality.
6. Methodology.

Three distinct populations of community-based long-term care users were identified:

1. Children with special health care needs.
2. Adults with disabilities.
3. Elderly.

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:

• Outcomes. More research on risk-adjusted outcome measures is needed. Improved identification of important patient risk factors is seen as fundamental.
• Workforce issues. Evidence-based approaches to recruitment and retention of qualified staff and workforce training is seen as essential.
• Family decisionmaking. More research on how families make decisions to meet long-term care needs is needed.
• Children with special health care needs. Experts noted the dearth of even descriptive data regarding this population and their long-term care needs, utilization, and patterns of caregiving.

The afternoon session focused on a discussion and recommendations for measuring quality of community-based services. The discussion had three goals:

• To determine how quality concerns in community-based long-term care differed from residential long-term care.
• To determine if quality concerns differed for the three long-term care subpopulations.
• To get advice about specific long-term care quality measures that could be achieved with existing data.

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.

Recommendations

Experts provided many recommendations for filling research and national data gaps. The following list highlights these recommendations:

• National long-term care data on persons living in the community have focused mainly on the elderly. More data on the patterns of service delivery are needed about the nonelderly.
• Periodic collection of data is important to monitor changes in the service delivery system.
• Sample sizes in national data need to be increased to better study subpopulations.
• Disability measures for children should be improved.
• Data on informal caregivers need to be expanded to better capture influence on caregivers' lives, including influence on work and social, psychological, and physical burden.

Current as of April 2002