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.
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EfficaceFGaidanoGBrecciaM. Prevalence, severity and correlates of fatigue in newly diagnosed patients with myelodysplastic syndromes. Br J Haematol2015;168:361–370.
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LeBlancTW. Addressing end-of-life quality gaps in hematologic cancers: the importance of early concurrent palliative care. JAMA Intern Med2016;176:265–266.
EfficaceFGaidanoGBrecciaM. Prognostic value of self-reported fatigue on overall survival in patients with myelodysplastic syndromes: a multicentre, prospective, observational, cohort study. Lancet Oncol2015;16:1506–1514.
AbelGAEfficaceFBucksteinRJ. Prospective international validation of the Quality of Life in Myelodysplasia Scale (QUALMS). Haematologica2016;101:781–788.