McMillan S C, Weitzner M
American Cancer Society Professor of Oncology Nursing, University of South Florida College of Nursing, Tampa, USA.
Cancer Pract. 1998 Sep-Oct;6(5):282-8. doi: 10.1046/j.1523-5394.1998.00023.x.
Improving or maintaining the quality of life for persons with cancer is a major goal of end-of-life care; however, to measure quality-of-life outcomes, a valid and reliable measure is needed. The purpose of this project was to report the psychometric properties of the revised Hospice Quality of Life Index (HQLI), including validity and reliability for hospice patients with cancer.
Data were collected from home care hospice patients with cancer (n = 255) and a group of apparently healthy adults in the community (n = 32). The revised HQLI is a 28-item self-report instrument that includes three subscales: Psychophysiological Well-being, Functional Well-being, and Social/Spiritual Well-being.
Evidence for validity was provided in three ways. First, factor analysis confirmed the three subscales (Psychophysiological, Functional, and Social/Spiritual Well-being). Second, a weak significant correlation was found between the Easterm Cooperative Oncology Group Performance Status Rating scores and HQLI scores (r = .26; P = .00). Third, the HQLI was able to discriminate between hospice patients with cancer and apparently healthy adults (lambda = .34; P = .00). In addition, the mean scores of these two groups were significantly different (t = 6.64; P = .00). However, only a minimal difference in scores was found on the Social/Spiritual Well-being subscale between the cancer and healthy groups. Reliability for the revised HQLI was high for both the total scale (alpha = .88) and the subscales (alpha =.82-.85).
Emphasis has been placed recently on understanding quality of life from the patient's perspective. The development of a valid and reliable tool can guide care givers in providing meaningful quality-of-life care. The HQLI provides patients the opportunity to express beliefs about quality-of-life issues and to maintain direction over a critical aspect of their care. Of note from this study, the significant difference between groups in functional well-being and minimal difference in social/spiritual well-being suggest that patients are able to appraise their functional abilities realistically and still maintain their social network and spiritual beliefs. Indeed, it may be that patients give family relationships and spiritual beliefs greater focus during a terminal illness.
改善或维持癌症患者的生活质量是临终关怀的主要目标；然而，为了衡量生活质量结果，需要一种有效且可靠的测量方法。本项目的目的是报告修订后的临终关怀生活质量指数（HQLI）的心理测量特性，包括其对临终关怀癌症患者的有效性和可靠性。
数据收集自居家护理的临终关怀癌症患者（n = 255）和一组社区中看似健康的成年人（n = 32）。修订后的HQLI是一份包含28个条目的自我报告工具，包括三个子量表：心理生理幸福感、功能幸福感和社会/精神幸福感。
从三个方面提供了有效性证据。首先，因子分析证实了这三个子量表（心理生理、功能和社会/精神幸福感）。其次，东部肿瘤协作组体能状态评分与HQLI评分之间存在微弱的显著相关性（r = 0.26；P = 0.00）。第三，HQLI能够区分临终关怀癌症患者和看似健康的成年人（λ = 0.34；P = 0.00）。此外，这两组的平均得分有显著差异（t = 6.64；P = 0.00）。然而，癌症组和健康组在社会/精神幸福感子量表上的得分差异极小。修订后的HQLI在总量表（α = 0.88）和子量表（α = 0.82 - 0.85）上的可靠性都很高。
最近人们强调从患者的角度理解生活质量。开发一种有效且可靠的工具可以指导护理人员提供有意义的生活质量护理。HQLI为患者提供了表达对生活质量问题看法的机会，并能在其护理的关键方面保持主导方向。从这项研究中值得注意的是，两组在功能幸福感上的显著差异以及在社会/精神幸福感上的极小差异表明患者能够现实地评估自己的功能能力，同时仍能维持其社交网络和精神信仰。事实上，在绝症期间，患者可能会更关注家庭关系和精神信仰。
