Thomas Mary Laudon
VA Palo Alto Health Care System, Palo Alto, CA, USA.
J Support Oncol. 2012 Jan-Feb;10(1):37-44. doi: 10.1016/j.suponc.2011.05.003.
Little is known about the impact of myelodysplastic syndromes (MDS) on the quality of life (QOL) of those living with the disease.
The purpose of this qualitative study was to explore this phenomenon.
Seventy patients with MDS participated in five focus groups conducted throughout the United States. Transcripts from recordings of focus group sessions were coded and emerging themes identified using thematic analysis.
Findings revealed a multifaceted description of how MDS affects QOL. MDS was found to cause a substantial and sustained decrease in ability to function. QOL was adversely affected by work expended on managing the disease. The emotional impact was often viewed as more problematic than the physical impact; emotional reactions included shock, anger, depression, and anxiety. In contrast, spiritual well-being was often enhanced, with a renewed appreciation for life, relationships, and faith.
Data from this study suggest that MDS has a substantial, often negative impact on patients' lives and clinicians should be cognizant of this impact. Attention must be directed at providing more comprehensive support for the patient throughout the illness trajectory.
The method of subject recruitment may have limited participation to individuals who are more proactive in obtaining information about their illness. The focus groups convened only once; thus, purposive sampling and repeated assessments were not possible.
关于骨髓增生异常综合征（MDS）对该疾病患者生活质量（QOL）的影响，人们了解甚少。
本定性研究旨在探讨这一现象。
70名MDS患者参与了在美国各地开展的5个焦点小组。焦点小组会议录音的文字记录进行了编码，并使用主题分析确定了新出现的主题。
研究结果揭示了MDS如何影响生活质量的多方面描述。发现MDS会导致功能能力大幅且持续下降。管理疾病所花费的精力对生活质量产生了不利影响。情感影响通常被认为比身体影响更成问题；情感反应包括震惊、愤怒、抑郁和焦虑。相比之下，精神幸福感常常得到增强，对生活、人际关系和信仰有了新的认识。
本研究数据表明，MDS对患者生活有重大且往往是负面影响，临床医生应认识到这一影响。在整个疾病过程中，必须注重为患者提供更全面的支持。
受试者招募方法可能使参与仅限于那些更积极获取自身疾病信息的个体。焦点小组仅召集了一次；因此，无法进行目的抽样和重复评估。
