恶性脑胶质瘤放疗患者生存质量及家属感受的随访研究

目的：研究已故恶性脑胶质瘤放疗患者的家属对其生存质量的感受。方法：选择西安交大第一附属医院2006年至2009年治疗的56例脑胶质瘤患者。对所有患者进行随访，对他们的生存数据及去世后家属对生存质量的看法进行回顾性分析。结果：对可参加正常活动或参与社交的患者，其生存质量称为“良好或可接受”；对生活受限或不能自理，健康状况每况愈下，或丧失社交能力者，生存质量称为“差或不接受”。这种状态下生存期限也显现出其重要性。家属认为其生存质量好或是可以接受的观点与诊断后患者早期的认知能力减退、人格改变或轻度痛苦是不相关的，而与他们治疗无躯体障碍的生存时间至少超过1个月有关。对放疗的满意度与早期无明显痛苦、手术分级以及总体生存时间超过6个月相关。结论：对已故病人家属的感受进行细致的研究可以为我们在疑难治疗的决断上提供有用的参考。他们的观点支持将残疾和痛苦应用在生存质量的评价中，但对用总体生存时间或摆脱躯体障碍后的生存时间去评判治疗是否有价值的质量调整寿命年（QALY）模式尚不能定论。

A fllow up study about quality of slife after radiotherapy for malignant cerebral glioma and the views of relatives

Objective：To explore the views of bereaved relatives about quality of survival after radiotherapy for malignant cerebal glioma. Methods： Fifty six patients with cerebral glioma were treated at the Fist Affiliated Hospital of of Xi＇an Jiaotong University from 2006 to 2009. All patients were followed up and their survival data and the views to life quality of bereaved relatives were analiyzed retrospectively. Results ： Relatives described quality of life as ＂ good or acceptable＂ when patients carried on some normal activities or enjoyed social relationships. They described restricted and dependent states, contact deterioration, or loss of social interaction as ＂poor or acceptable＂ quality of life. Length of time lived in such states also appeared important. Relatives/views of good or acceptable quality of life were independently related to low initial cognitive or personality change or low distress in the patients after diagnosis, and to their subsequent survival free from physical disability for at least one month. Satisfaction with radiotherapy was related to low initial distress, some degree of surgical resection, and overall length of survival longer than six months. Conclu- sion： Carefully exploring the views of bereaved relatives can bring a useful perspective to difficult treatment decisions. Their values support including disability and distress in quality of life measures.