The Impact of Myelodysplastic Syndromes on Patients’ Lives.
Authors: Thomas Mary L. , Heptinstall Kathleen , Hassan Audrey 
Published: October 2019

Abstract
While recent research has greatly enhanced understanding of the pathology of the disease, and new treatment modalities have been developed, little is known about myelodysplastic syndromes (MDS) from the patient’s perspective. The purpose of this qualitative study was to explore the impact of MDS on patients’ quality of life (QOL). Five focus groups were convened at different geographic locations throughout the United States; 70 MDS patients attended and 62 actively participated in the discussions (89%). The framework for the study was based on Ferrell’s work exploring the impact of cancer on QOL (Oncology Nursing Forum, 1996). Exploratory in nature, the discussions often proceeded in differing directions, but the core open-ended questions were asked at each session. Sessions were tape recorded and professionally transcribed. Transcripts were coded and emerging themes identified using thematic analysis methods aided by the qualitative analysis program N5 (QSR International). The patient sample was 93% Caucasian, 51% male, with a mean age of 69 ± 9 years; 26% lived alone. Known MDS subtype was: 19 RA, 19 RARS, 11 RAEB, 3 5q-, 2 other (16 unknown); median time since diagnosis was 26 months (3 – 276 months). MDS treatment varied considerably: 73% of patients received growth factors, 61% transfusions, 19% azacitidine, 16% thalidomide, 14% iron chelation; 29% all other; many patients received multiple (often concurrent) therapies. Findings from the focus groups revealed a multifaceted description of how MDS can affect one’s QOL. QOL was typically defined by these patients as maintaining functional ability and independence, sustaining positive relationships, and maintaining control over one’s life. In contrast, MDS was found to cause a substantial and sustained decrease in one’s ability to function in a variety of areas, in part due to fatigue (reported by 81% of the patients). QOL was adversely affected by the work expended on managing the disease: frequent office visits, monitoring symptoms, administering therapy, and managing side effects. Family functioning was also disrupted, with family members resuming patients’ roles, limiting activities, and providing direct care. Interestingly, the emotional impact from MDS 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 (29% of patients). Many patients (50%) voiced concern about their future and the inability to plan for it effectively. Frustration with their current status caused the majority of patients to continue to seek out additional information about MDS and potential treatment options, as well as to make attempts to take some control over a seemingly uncontrolled situation. Data from this study suggest that MDS has a substantial, often negative impact on patients’ lives, and clinicians should be cognizant of this impact. Moreover, attention must be directed at providing more comprehensive support for the patient, including utilizing ancillary support services, throughout the illness trajectory. In so doing, the adverse impact of MDS on patients’ QOL may be diminished.