Being diagnosed and living with cancer can affect psychological and social well-being, interfere with tasks of daily living, reduce quality of life (QOL), and translate into physical health problems1; these psychosocial complications of cancer are referred to as “distress.”2 Approximately one-third of patients with cancer experience distress.3 Distress may affect successful management of cancer through negatively impacting patients' adherence to therapy and decision-making capacity, and distress has been associated with reduced survival in some cancers.4–6
Myelodysplastic syndromes (MDS) are diagnosed primarily in older people and represent a diverse group of malignant bone marrow disorders with variable clinical outcome.7 QOL is substantially impacted by MDS.8 Distress is increased in patients with cancer when comorbid conditions are present, symptoms are uncontrolled, and changes occur in disease status.2 Thus, distress is likely to be a concern with respect to clinical outcomes in MDS.
The NCCN Distress Thermometer (DT) and accompanying Problem List (PL) have been used to measure distress in several tumor types but has not yet been applied to MDS. Although MDS cases were included in studies describing distress in patients receiving hematopoietic stem cell transplant (HSCT), these studies did not report results for MDS specifically.9–11 Furthermore, because HSCT is infrequently used to treat MDS, these results are not likely to be representative of distress levels in the broader MDS population.
To our knowledge, no data have been published on distress in patients with MDS receiving non-transplant therapies in an ambulatory care setting, where most of these patients are managed. There is also reason to suspect that patient-reported distress might correlate with disease activity, given that it reflects how patients are feeling, perhaps beyond what is measurable in routine laboratory assessments (eg, fatigue is known to correlate poorly with hemoglobin levels).12 Therefore, we conducted a retrospective evaluation of distress in patients with MDS. Our intent was to describe the magnitude and sources of distress, and explore associations with clinical outcomes among patients with MDS.
Dr. Troy has disclosed that he has is a consultant for Gamida, and has received grants from Seattle Genetics. Dr. Abernethy has disclosed that she is employed at Flatiron Health, is on the Board of Directors for Athena Health, and owns stock in Flatiron Health and Athena Health. Dr. LeBlanc has disclosed that he is a consultant for Celgene, Boehringer Ingelheim, Pfizer, Epi-Q/Janssen, Flatiron Health, and Helsinn; and that he has received grants from Seattle Genetics, AstraZeneca, and Cambia Health Solutions. The remaining authors have disclosed that they have no financial interests, arrangements, affiliations, or commercial interests with the manufacturers of any products discussed in this article or their competitors.
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