title: 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.
authors.affiliation: Division of Hematological Malignancies, Department of Medical Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts.
authors.forename: David P
authors.initials: DP
authors.lastname: Steensma
authors.forename: Rami S
authors.initials: RS
authors.lastname: Komrokji
authors.forename: Richard M
authors.initials: RM
authors.lastname: Stone
authors.forename: Alan F
authors.initials: AF
authors.lastname: List
authors.forename: Guillermo
authors.initials: G
authors.lastname: Garcia-Manero
authors.forename: John M
authors.initials: JM
authors.lastname: Huber
authors.forename: Betsy
authors.initials: B
authors.lastname: Dennison
authors.forename: Mikkael A
authors.initials: MA
authors.lastname: Sekeres
mesh_terms: D000328:Adult; D000368:Aged; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009190:Myelodysplastic Syndromes / Q000628:therapy*; D010353:Patient Education as Topic; D010465:Perception; D010820:Physicians; D016896:Treatment Outcome
keywords: azacitidine; communication; decitabine; lenalidomide; myelodysplastic syndromes; therapy adherence