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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 To explore the impact of MDS on the quality of life of those living with the disease.
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.
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.
Conclusions 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.
Click on the PDF icon at the top of this introduction to read the full article.
Background Little is known about the impact of myelodysplastic syndromes (MDS) on the quality of life (QoL) of those living with the disease.
Objectives To explore the impact of MDS on the quality of life of those living with the disease.
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.
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.
Conclusions 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.
Click on the PDF icon at the top of this introduction to read the full article.
Background Little is known about the impact of myelodysplastic syndromes (MDS) on the quality of life (QoL) of those living with the disease.
Objectives To explore the impact of MDS on the quality of life of those living with the disease.
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.
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.
Conclusions 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.
Click on the PDF icon at the top of this introduction to read the full article.