Osoba D, Aaronson N K, Muller M, Sneeuw K, Hsu M A, Yung W K, Brada M, Newlands E
British Columbia Cancer Agency, University of British Columbia, Vancouver, Canada.
Qual Life Res. 1996 Feb;5(1):139-50. doi: 10.1007/BF00435979.
A self-report questionnaire module consisting of 24 items, comprising 5 scales and 7 single items, has been developed for measuring health-related quality of life in patients with brain cancer. Module development proceeded through several stages, including a listing of patient, family and health care professional concerns, the writing of items, field testing in 105 patients with brain cancer and subsequent item reduction and scale construction after multitrait scaling analysis and assessment of internal consistency (Cronbach's coefficient alpha). The final version of the module exhibits reasonable test-retest stability over a period of one week. Differences in the responses between patients with recently-diagnosed and recurrent cancer and between patients with a Karnofsky Performance Score (KPS) of 50-70 and 80-100 were in the expected direction, indicating that the module of questions is responsive to differing conditions. Patients with either mental confusion, motor deficit or dysphasia indicated problems in several domains and single items as compared to patients without these neurological deficits. Thus, differences in the responses to the items in the brain cancer module appear to reflect differences in neurological status. In addition, deteriorating neurological status was accompanied by a marked increase in emotional distress, future uncertainty and motor dysfunction. A comparison of the responses in the module with the KPS and with a modified Barthel Activities of Daily Living Index (BADLI) shows moderate correlations, primarily with scales and items that pertain to motor dysfunction, while other scales (such as emotional distress, visual disorder and communication deficit) and most single items are not associated with the KPS or BADLI. Since the emotional distress scale of the module was found to be highly correlated with the emotional function scale of the EORTC QLQ-C30, it could be omitted when the module is used in combination with the QLQ-C30. This would reduce the module to a total of 20 items with four scales and seven single items. The intention is to combine this module of questions with other core or general quality-of-life questionnaires when studying patients with brain cancer in clinical trials.
已开发出一个由24个项目组成的自我报告问卷模块，包括5个量表和7个单项，用于测量脑癌患者的健康相关生活质量。模块开发历经多个阶段，包括列出患者、家属和医护人员关注的问题，编写项目，对105名脑癌患者进行现场测试，以及在多特质量表分析和内部一致性评估（克朗巴哈系数α）后进行项目缩减和量表构建。该模块的最终版本在一周时间内表现出合理的重测稳定性。近期诊断的癌症患者与复发癌症患者之间以及卡诺夫斯基功能状态评分（KPS）为50 - 70分和80 - 100分的患者之间的回答差异符合预期方向，表明该问题模块对不同情况有反应。与没有这些神经功能缺损的患者相比，有精神错乱、运动功能障碍或言语障碍的患者在几个领域和单项中都存在问题。因此，脑癌模块中对项目的回答差异似乎反映了神经状态的差异。此外，神经状态恶化伴随着情绪困扰、未来不确定性和运动功能障碍的显著增加。将该模块中的回答与KPS以及改良的巴塞尔日常生活活动指数（BADLI）进行比较，显示出中等相关性，主要与涉及运动功能障碍的量表和项目相关，而其他量表（如情绪困扰、视觉障碍和沟通缺陷）以及大多数单项与KPS或BADLI无关。由于发现该模块的情绪困扰量表与欧洲癌症研究与治疗组织生活质量问卷核心量表（EORTC QLQ - C30）的情绪功能量表高度相关，因此当该模块与QLQ - C30联合使用时，可以省略该量表。这样该模块将减少到总共20个项目，包括4个量表和7个单项。目的是在临床试验中研究脑癌患者时，将这个问题模块与其他核心或一般生活质量问卷结合使用。
