Klein M
Department of Medical Psychology, VU University Medical Center, Amsterdam, The Netherlands.
Adv Tech Stand Neurosurg. 2010;35:213-35. doi: 10.1007/978-3-211-99481-8_8.
Standard therapeutic options for brain tumors include surgery, radiotherapy, and chemotherapy. Unfortunately, these same therapies pose risks of neurotoxicity, the most common long-term complications being radiation necrosis, chemotherapy-associated leukoencephalopathy, and cognitive deficits. Currently, there is no consensus on the treatment strategy for these tumors. Because of the relatively slow growth rate of low-grade gliomas, patients have a relatively long expected survival. Compared to traditional outcome measures like (progression-free) survival, evaluation of health-related quality of life may be time-consuming and burdensome for both the patient and the doctor. Besides, given the relatively low incidence of brain tumors and the ultimately fatal outcome of the disease, the interest in HRQOL emerged relatively late in these patients. Moreover, the notion that the disease itself may affect the patient's ability to judge his or her own functioning may hinder the use of patient self-reported measures. The studies presented in this chapter describe outcomes of both single dimensional and multidimensional methods of studying HRQOL. Although only few studies incorporated HRQOL as outcome measure, most studies have embraced the notion that an accurate assessment of HRQOL must be based on patient self-report. HRQOL instruments from other cancer groups are adapted for use with brain tumor patients. The multidimensional scales used to study changes in HRQOL studies in brain tumor patients provide a more comprehensive view of what is important to the patient concerning living with their disease and receiving treatment. In future trials, more sensitive measures of long-term cognitive, functional, and HRQOL outcomes on LGG patients at important time points over the disease trajectory are needed to better understand the changing needs that take place over time.
脑肿瘤的标准治疗选择包括手术、放疗和化疗。不幸的是，这些治疗同样存在神经毒性风险，最常见的长期并发症是放射性坏死、化疗相关的白质脑病和认知缺陷。目前，对于这些肿瘤的治疗策略尚无共识。由于低级别胶质瘤的生长速度相对较慢，患者的预期生存期相对较长。与（无进展）生存期等传统结局指标相比，评估健康相关生活质量对患者和医生来说可能既耗时又费力。此外，鉴于脑肿瘤的发病率相对较低且疾病最终会导致致命后果，对这些患者健康相关生活质量的关注出现得相对较晚。而且，疾病本身可能影响患者判断自身功能的能力这一观念可能会阻碍患者自我报告测量方法的使用。本章介绍的研究描述了研究健康相关生活质量的单维度和多维度方法的结果。尽管只有少数研究将健康相关生活质量作为结局指标，但大多数研究都认同准确评估健康相关生活质量必须基于患者自我报告这一观点。来自其他癌症群体的健康相关生活质量工具经过改编后用于脑肿瘤患者。用于研究脑肿瘤患者健康相关生活质量变化的多维度量表，能更全面地了解对患者来说与疾病共存和接受治疗相关的重要方面。在未来的试验中，需要在疾病进程的重要时间点对低级别胶质瘤患者的长期认知、功能和健康相关生活质量结局进行更敏感的测量，以便更好地了解随时间变化的需求。
