The impact of myelodysplastic syndromes on quality of life: lessons learned from 70 voices.

Background: Little is known about the impact of myelodysplastic syndromes (MDS) on the quality of life (QOL) of those living with the disease.

Objectives: The purpose of this qualitative study was to explore this phenomenon.

Methods: 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.

Results: 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.

Conclusions: 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.

Limitations: 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.