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

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Appendix 3. Participant Information and Pre-Meeting Questionnaire


May 5, 2000

To: Participants, Community-Based Long-Term Care Meeting
From: William Spector, Ph.D. and Jeffrey Rhoades, Ph.D.
Agency for Healthcare Research and Quality

Thank you for agreeing to participate in the June 20-21 expert meeting, "The Future Directions of Health Services Research in Community-Based Long-Term Care." We are writing to provide further information on the context and goals of the meeting and to solicit important input from you in advance of the meeting.

This meeting follows up on the Agency for Healthcare Research and Quality's (AHRQ) Fall 1999 meeting that focused on persons living in residential care settings (i.e., nursing home care, assisted living and other residential care). In that meeting, we identified research priorities and data gaps, and discussed strategies for collecting survey data and using administrative data to fill these gaps. We also discussed ways to measure quality and monitor outcomes.

The focus of the upcoming June meeting will be community-based long-term care. Later in the year, the Agency is planning an additional meeting that will focus on the medical care needs of disabled persons, including such services as hospital care and medical rehabilitation. Because the content of these three meetings potentially overlap, it is important to avoid duplication where possible. For this reason, we would like to establish beforehand the intended content of this meeting. The goal of the meeting is to focus on community-based long-term care services for adults who have at least one IADL or ADL disability and children with physical and mental limitations. These community-based long-term care services include home care, personal assistant services, group homes, other housing with supportive services, and assistive technologies.

For all groups we are interested in services that help maintain community living and maximize independence, enable participation in social activities, and provide the necessary IADL and ADL supports. For children with special care needs, we also would like to discuss school-based services that assure a good education, and for working aged adults, we would like to discuss workplace-related services that improve access to the workplace. We are interested in care provided by agencies, family, and friends, both paid and unpaid.

The research interests of the Agency are very broad. We are the lead Agency within HHS for supporting research and efforts to improve health care quality. We also are broadly concerned with health issues related to access, cost, quality, and outcomes. Although we are ultimately interested in how the health system serves consumers, we also would like to know how provider and family decisions are made, how the changing market place and public policies affect these decisions, and how these decisions affect the efficiency and quality of the health care system. Although we will place boundaries on the discussion, we are interested in how well community-based long-term care is integrated with residential long-term care and other parts of the health system.

Within this context, we have four goals for this meeting:

  1. To identify the priority research and policy questions associated with community-based long-term care;
  2. To identify the most important quality measures (outcomes, process, and structural measures) and strategies for collecting these measures;
  3. To identify data gaps, especially associated with national data, and establish priorities for filling these gaps; and,
  4. To solicit advice on how DHHS can fill data gaps, take advantage of both survey and administrative data, and cost-effectively continue to develop data on community-based long-term care.

This two-day meeting will cover a lot of material. Because we want the sessions to include as much valuable discussion as possible, we are sharing with you the enclosed set of questions and soliciting your responses to them in advance of the meeting so that we will not be starting from scratch. We will use your responses to the pre-meeting questions to develop working documents to be used as the basis for the meeting discussions. We will use the meeting itself to fine tune your ideas and develop recommendations. To this end, we would appreciate you responding to the attached set of questions by May 26.

Again, our thanks. We look forward to seeing you in June.

Preliminary Questions for Community-Based Long-Term Care Meeting

  • Focusing on community-based long-term care, please provide us with five research or policy questions that you think are the highest priority. Consider issues related to access, cost, quality, and outcomes. Consider consumer, provider, and family caregiving issues. Please focus on the population that you are most expert in: children with special needs, adults with disabilities, or elderly.

  • For those who are currently engaged in research on these topics, please let us know:

    • What data sets you use.
    • Why you have chosen these data sets over others.
    • What are the advantages and disadvantages of these data compared with other data that are available.
    • What improvements you would like to see made.
  • We are beginning an effort to develop national quality measures for long-term care. We would like your recommendations on what should be measured to develop national quality indicators for community-based long-term care. These measures will be used to monitor trends in the quality of care over time.

    We are interested in outcomes, process and structure measures as well as associated risk factors. Clearly we are interested in the quality of both formal and informal care. For your guidance, we have enclosed the summary of the quality dimensions and risk factors compiled from recommendations for our fall 1999 expert meeting that was focused on nursing home and residential care. We are interested in additional domains and specific examples relevant to community-based care. When making recommendations, please discuss the feasibility of collecting these data as part of national data collection.

    Please focus on the population that you are most expert in: children with special needs, disabled, or elderly disabled.

Given that the participants of this meeting have a broad range of expertise, we understand that some of you will be more able to respond to some questions than others. If you can provide insights into all areas, that is great. Otherwise, please provide us with as much help as you can.

Please respond by May 26. Thank you in advance.


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