Disparity in perceptions of disease characteristics, treatment effectiveness, and factors influencing treatment adherence between physicians and patients with myelodysplastic syndromes

Abstract

BACKGROUND: Previous studies have suggested that many patients with myelodysplastic syndromes (MDS) have an incomplete understanding of their disease, which may influence adherence to prescribed regimens and outcomes. METHODS: To better understand physician and patient perceptions about MDS and MDS therapy, the authors conducted 2 surveys in February 2012: 1 for patients with MDS and 1 for health care professionals (HCPs) who cared for patients with MDS. Patient and HCP surveys consisted of 57 and 49 questions, respectively, assessing understanding of MDS, perceptions of specific treatments, barriers to treatment adherence, and treatment experience. RESULTS: In total, 477 complete patient responses and 120 complete HCP responses were received. Among patient responders, 63% were aged 60 years, and 42% had received at least 1 disease-modifying therapy. Of the 61 physician responders, 57% practiced in an academic setting, and 43% practiced in the community; 71% of the 59 nonphysician HCPs worked in the community setting. Only 10% of patients agreed that MDS represented "cancer" compared with 59% of physicians and 46% of nonphysician HCPs (P <.001). Only 29% of patients reported that MDS was ever "curable" compared with 52% of physicians (P <.001). Physicians viewed the potential benefits of active therapy as greater than patients, but patients perceived the actual treatment experience more positively than physicians and differed from physicians in perceived reasons for stopping therapy. CONCLUSIONS: Physicians, nonphysician HCPs, and patients with MDS have disparate views of MDS characteristics and the value and limitations of treatments for MDS. Improved communication and education may increase understanding and achieve better treatment adherence and patient outcomes.

Clonal hematopoiesis of indeterminate potential and its distinction from myelodysplastic syndromes

“…78,79 This semantic distinction influences patient self-perception and has practical consequences for regulatory jurisdiction, health care resource allocation, cancer-specific indemnity policy payouts, and research funding eligibility.…”

Recent developments in myelodysplastic syndromes

“…Perhaps more important is education of patients and physicians, many of whom in a recent survey seemed unaware of the potential for HSCT to cure patients with MDS. 126 The current number of patients undergoing SCT in the United States is only a small fraction of those who are potential candidates for the procedure, as many patients lack a donor, choose not to undergo HSCT because of concerns about changes in quality of life or fear of adverse events, or are never referred to a center where HSCT can be performed.…”

Does quality of life impact the decision to pursue stem cell transplantation for elderly patients with advanced MDS?

“…31,32 Perhaps, as a result, one study suggested that approximately half of MDS patients favor a passive role in treatment decision-making, 33 making clinician recommendations the primary driver of most treatment decisions. Our data suggest that QOL concerns may not be routinely incorporated in the treatment decision-making for older patients with MDS.…”