Zimmerman Sheryl, Cohen Lauren, van der Steen Jenny T, Reed David, van Soest-Poortvliet Mirjam C, Hanson Laura C, Sloane Philip D
Cecil G. Sheps Center for Health Services Research, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA; School of Social Work, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
Cecil G. Sheps Center for Health Services Research, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA; Department of Medicine Palliative Care Program, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
J Pain Symptom Manage. 2015 Apr;49(4):666-79. doi: 10.1016/j.jpainsymman.2014.08.009. Epub 2014 Sep 6.
The two primary residential options for older adults who require supportive care are nursing homes and residential care/assisted living. More than one-quarter of all deaths in the U.S. occur in these settings. Although the information available on end of life in long-term care has been growing, the comparative suitability of various measures to guide this work is unknown.
To determine the optimal measures to assess end-of-life care and outcomes in nursing homes and residential care/assisted living.
A total of 264 family members of decedents from 118 settings were interviewed and provided data on 11 instruments that have been used in, but not necessarily developed for, long-term care populations; Overall, 20 scales and subscales/indices were evaluated. Measures were compared on their psychometric properties and the extent to which they discriminated among important resident, family, and setting characteristics.
Prioritizing measures that distinguish the assessment of care from the assessment of dying, and secondarily that exhibit an acceptable factor structure, this study recommends two measures of care-the Family Perceptions of Physician-Family Caregiver Communication and the End of Life in Dementia (EOLD)-Satisfaction With Care-and two measures of outcomes-the EOLD-Symptom Management and the EOLD-Comfort Assessment in Dying. An additional measure to assess outcomes is the Mini-Suffering State Examination (MSSE). The care measures and the MSSE are especially valuable as they discriminate between decedents who were and were not transferred immediately before death, an important outcome, and whether the family expected the death, a useful target for intervention.
Despite these recommendations, measurement selection should be informed not only on the basis of psychometric properties but also by specific clinical and research needs. The data in this manuscript will help researchers, clinicians, and administrators understand the implications of choosing various measures for their work.
对于需要支持性护理的老年人，两种主要的居住选择是养老院和寄宿护理/辅助生活机构。美国超过四分之一的死亡发生在这些机构中。尽管关于长期护理中临终情况的可用信息一直在增加，但指导这项工作的各种措施的相对适用性尚不清楚。
确定评估养老院和寄宿护理/辅助生活机构中临终护理及结果的最佳措施。
对来自118个机构的264名死者家属进行了访谈，并提供了关于11种工具的数据，这些工具曾用于长期护理人群，但不一定是为该人群开发的；总体而言，评估了20个量表和子量表/指数。比较了这些措施的心理测量特性以及它们在区分重要的居民、家庭和机构特征方面的程度。
本研究优先考虑那些能将护理评估与死亡评估区分开来的措施，其次是那些具有可接受的因素结构的措施，推荐了两种护理措施——家庭对医患-家庭护理人员沟通的看法和痴呆症临终（EOLD）-护理满意度，以及两种结果措施——EOLD-症状管理和EOLD-临终舒适度评估。另一种评估结果的措施是简易痛苦状态检查（MSSE）。护理措施和MSSE特别有价值，因为它们能区分死亡前是否立即转诊的死者（一个重要结果），以及家属是否预期到死亡（一个有用的干预目标）。
尽管有这些建议，但测量方法的选择不仅应基于心理测量特性，还应考虑具体的临床和研究需求。本手稿中的数据将帮助研究人员、临床医生和管理人员了解选择各种措施对其工作的影响。
