Research agenda for developing measures to examine quality of care and quality of life of patients diagnosed with life-limiting illness

Despite the universality of dying, research has not focused on developing c onceptual models and measurement tools for examining the quality of care an d quality of life of dying patients and their loved ones. We present here a vision and research agenda for the development of a Tool Kit of Instrument s to Measure End of Life Care (TIME). Instruments for inclusion in the even tual "Tool Kit" should be patient-focused and family-centered, clinically m eaningful, administratively manageable, and psychometrically sound. Priorit izing domains to measure quality of care should be based on consumer input and synergistic with ongoing efforts to formulate guidelines and standards of care. For this vulnerable population research is needed regarding the ti ming and sources of data collection. In order to achieve maximal benefit, u ltimately measurement tools must be incorporated into existing measurement systems and consideration be given to generating informative reports which lends to institutional action to improve the quality of care. J Pain Sympto m Manage 1999;17:75-82. (C) U.S. Cancer Pain Relief Committee, 1999.