Teno J M, Byock I, Field M J
Center for Gerontology and Health Care Research, Brown University, Providence, Rhode Island, USA.
J Pain Symptom Manage. 1999 Feb;17(2):75-82. doi: 10.1016/s0885-3924(98)00134-1.
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). Instruments for inclusion in the eventual "Tool Kit" should be patient-focused and family-centered, clinically meaningful, administratively manageable, and psychometrically sound. Prioritizing 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 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.
尽管死亡具有普遍性，但研究尚未集中于开发概念模型和测量工具，以检验临终患者及其亲人的护理质量和生活质量。我们在此提出一个愿景和研究议程，以开发一套测量临终护理的工具包（TIME）。最终纳入“工具包”的工具应以患者为中心、以家庭为导向，具有临床意义，便于管理，并在心理测量学上合理。确定护理质量测量领域的优先级应基于消费者的意见，并与制定护理指南和标准的持续努力协同进行。对于这一弱势群体，需要研究数据收集的时间和来源。为了实现最大效益，最终必须将测量工具纳入现有的测量系统，并考虑生成能促使机构采取行动改善护理质量的信息报告。
