Thomas M L
Veterans Affairs Palo Alto Health Care System, CA 94304, USA.
Leuk Res. 1998 May;22 Suppl 1:S41-7. doi: 10.1016/s0145-2126(98)00055-1.
Health-related quality of life (QOL) is a dynamic, subjective, multidimensional concept. In chronic illnesses such as myelodysplastic syndromes (MDS), management typically focuses on control of the disease and its symptoms. Yet an equally important consideration is maintaining the patient's QOL. Much research remains to be done on the subject of QOL in the MDS population. MDS patients have unique problems that can affect QOL: they tend to be elderly and to have comorbid conditions; they develop complications resulting from cytopenias such as infection and bleeding; they experience fatigue; they run the risk of converting to a form of acute leukemia typically resistant to therapy; and they face uncertainty. This paper will address the above problems using a conceptual approach to QOL that has been useful for patients with cancer and various chronic illnesses. The approach, based on the work of Ferrell and Cella, concentrates on five areas of the patient's life: the physical, functional, emotional, social, and spiritual. Actual testing of this conceptual framework in the MDS patient population has begun. Here methods of systematically testing and assessing QOL are discussed in order to help clinicians meet the primary purpose of therapy in the setting of chronic illness: improving or preserving the individual's QOL.
健康相关生活质量（QOL）是一个动态、主观的多维概念。在骨髓增生异常综合征（MDS）等慢性疾病中，治疗通常侧重于控制疾病及其症状。然而，同样重要的一个考虑因素是维持患者的生活质量。关于MDS患者群体生活质量这一主题仍有许多研究有待开展。MDS患者存在一些会影响生活质量的独特问题：他们往往年事已高且伴有合并症；会出现血细胞减少症引发的并发症，如感染和出血；会感到疲劳；有转化为通常对治疗耐药的急性白血病形式的风险；并且面临不确定性。本文将采用一种对癌症患者和各种慢性疾病患者有用的生活质量概念方法来解决上述问题。该方法基于费雷尔（Ferrell）和塞拉（Cella）的研究成果，专注于患者生活的五个方面：身体、功能、情感、社会和精神方面。针对MDS患者群体对这一概念框架的实际测试已经开始。在此讨论系统测试和评估生活质量的方法，以帮助临床医生实现慢性疾病治疗的主要目的：改善或维持个体的生活质量。
