A fundamental barrier in the quality of care at the end of life is the lack of measurement tools. These measurement tools should identify opportunities for improving medical care, examining the impact of interventions or demonstration programs, and holding institutions accountable for their quality of care. The Toolkit takes steps toward crossing this measurement barrier by creating patient-focused, family-centered survey instruments that address the needs and concerns of patients and their families, as defined by them.

With funding from the Nathan Cummings Foundation and the Robert Wood Johnson Foundation, we have assembled an authoritative bibilography of instruments to measure the quality of care and quality of life for dying patients and their families. Based on these reviews, we have created the Toolkit instruments, which are available on this site at no charge.


Executive Summaries of the TIME Conferences

Annotated Bibliographies of Existing Instruments

Guidance on Choosing a Measurement Instrument

New Validated Instruments

Resource Guide for Using Toolkit Instruments

Old Draft Instruments

Slide Presentation: Conceptual Model of Patient Focused Family Centered Medical Care
(To view this presentation, you must have Adobe Acrobat Reader version 4.0 or greater.  If this is not installed on your computer, click here to download it for free.)

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Funding for this project was provided by
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This web site is published by the Center for Gerontology and Health Care Research, Brown Medical School. For further information, e-mail Dr. Joan Teno or contact her at Brown Medical School, Box G-HLL, Providence, RI, 02912, USA. For questions or comments regarding this website, please e-mail the webmaster. Last edited February 17, 2004.

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