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骨髓增生异常综合征患者生活质量的重要性。

The importance of quality of life for patients living with myelodysplastic syndromes.

作者信息

Thomas Mary Laudon, Crisp Nicole, Campbell Karen

机构信息

Veterans Affairs Palo Alto Health Care System, California, USA.

出版信息

Clin J Oncol Nurs. 2012 Jun;16 Suppl:47-57. doi: 10.1188/12.CJON.S1.47-57.

DOI:10.1188/12.CJON.S1.47-57
PMID:22641284
Abstract

Myelodysplastic syndromes (MDS) are a group of myeloid stem cell clonal disorders characterized by a wide variation in illness trajectory and potential treatment. The physical, functional, emotional, social, and spiritual well-being of individuals with MDS can be affected by both disease and treatment-related factors. As a result, the quality of life (QOL) in patients with MDS may vary throughout the course of the illness. To date, most research exploring QOL in patients with MDS has been conducted as part of clinical trials evaluating the effectiveness of a therapeutic intervention. Although data from those studies are useful, they do not fully address the issues critical to maintaining or maximizing QOL. Oncology nurses are in a key position to assist patients with MDS to maintain their QOL. Findings from comprehensive QOL assessments will guide nurses in providing relevant interventions and evaluating their outcomes. In this manner, oncology nurses can assist their patients to maximize QOL while living with this challenging illness.

摘要

骨髓增生异常综合征(MDS)是一组髓系干细胞克隆性疾病,其特点是疾病进程和潜在治疗方法差异很大。MDS患者的身体、功能、情感、社交和精神健康可能受到疾病和治疗相关因素的影响。因此,MDS患者的生活质量(QOL)在疾病过程中可能会有所不同。迄今为止,大多数探索MDS患者QOL的研究都是作为评估治疗干预效果的临床试验的一部分进行的。虽然这些研究的数据很有用,但它们并没有完全解决维持或最大化QOL的关键问题。肿瘤护士在协助MDS患者维持其QOL方面处于关键地位。全面QOL评估的结果将指导护士提供相关干预措施并评估其效果。通过这种方式,肿瘤护士可以帮助患者在患有这种具有挑战性的疾病时最大化QOL。

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