Journal of pain and symptom management
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J Pain Symptom Manage · Feb 1999
ReviewResearch 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 conceptual models and measurement tools for examining the quality of care and 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 Instruments to Measure End of Life Care (TIME). ⋯ For this vulnerable population, research is needed regarding the timing and sources of data collection. In order to achieve maximal benefit, ultimately measurement tools must be incorporated into existing measurement systems and consideration be given to generating informative reports which leads to institutional action to improve the quality of care.
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J Pain Symptom Manage · Feb 1999
ReviewFor every numerator, you need a denominator: a simple statement but key to measuring the quality of care of the "dying".
A mathematical rate is composed of a numerator, denominator, and time period of observation. Deciding who is in the denominator is a key, yet difficult task given the blurred boundaries of chronic illness, in examining the quality of care for dying patients. ⋯ Second, retrospective interviews could be used with family members or other loved ones about their perceptions of the quality of care in the last weeks of life. Improving the quality of care for dying patients and their families requires attention to this matter.
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J Pain Symptom Manage · Feb 1999
ReviewPhantom limb pain: a review of the literature on attributes and potential mechanisms.
This study presents a review of the literature on the attributes and potential mechanisms involved in phantom limb pain, encompassing studies describing pain in the residual limb, phantom sensation and phantom limb pain, and the difficulties that may arise when making these distinctions. A variety of theories have been proposed to explain causal mechanisms for phantom limb pain. Conceptually, research into phantom limb pain is informed by the particular theory of chronic pain that is dominant at the time the research is undertaken. ⋯ Psychological explanations were grounded in psychoanalytic or personality theories of chronic pain which propose that phantom limb pain results from pre-amputation psychological disturbance. Despite numerous studies examining phantom limb pain, much of this research has both conceptual and methodological shortcomings. As such, the application of these research findings to clinical practice has limited utility.
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J Pain Symptom Manage · Feb 1999
ReviewThe concept of quality of life of dying persons in the context of health care.
Considerable research has addressed quality of life and quality of care; however, it has not addressed adequately the experiences of patients and their families at the end of life. Health care may have a greater effect on quality of life during the dying process than it normally does. Building on research and expert review, a conceptual framework is presented that specifies and integrates quality of life and quality of health care indicators. ⋯ Patient and family perspectives are considered. The framework emphasizes quality of life, thus detailed definitions of each quality of life domain are provided. The goal is to facilitate development of a comprehensive set of measures to describe the quality of life of dying persons and evaluate the care they receive, to be used to improve end-of-life care.