Patient and Caregiver Insights into the Disease Burden of Myelodysplastic Syndrome.

Abstract

A diagnosis of myelodysplastic syndrome (MDS) is typically unexpected and can be difficult for patients to grasp. Not only is MDS a complicated disease to understand, which can contribute to stress and anxiety, but it also has an uncertain prognosis, which can be emotionally paralyzing. Not surprisingly, emotional distress and the symptom burden of MDS, including extreme fatigue due to cytopenias, negatively impact a patient’s quality of life (QOL). Studies have shown that patient-centered care—including greater physician understanding of the disease burden their patients experience, discussing and establishing agreed-on treatment goals, and including patients in the decision-making process about their care—may help improve patient QOL. To better understand patient and caregiver experiences with MDS and how the disease impacts QOL, a small survey was conducted of patients with MDS or leukemia and their caregivers on an online health network. Among the 30 respondents who completed the survey, four had MDS and one was a caregiver for a patient with MDS. Here we focus on the five MDS respondents and contextualize the findings with personal experiences from a patient and physician perspective. The patient perspective was provided by John Soper, PhD, DABCC, who was diagnosed with MDS in 2019. Dr Soper is a retired board-certified clinical chemist and a member of the MDS Foundation. The physician perspective was provided by Dr Ruben Mesa, Executive Director of the Mays Cancer Center at UT Health San Antonio MD Anderson. The survey responses and the accompanying patient and physician perspectives highlight the importance of open communication between patients and their healthcare provider to better serve those with MDS and improve their QOL.