354 Disease burden and treatment impact associated with myelodysplastic syndromes: Initial estimates

Patient and Family Resources for Living With Myelodysplastic Syndromes

“…Several surveys of both patients and HCPs have provided some insight into the characteristics of patients with MDS, what patients with MDS understand about their disease, what they perceive as unmet needs, and what they feel are the optimal characteristics of HCPs. The epidemiologic characteristics of the disease in all surveys confirmed the prevalence of MDS in patients older than age 65 years (Demakos & Kurtin, 2011;Ma, Does, Raza, & Mayne, 2007;Sekeres, 2011). That fact is important when considering the best approach to patient education and support given the trend toward online resources.…”

“…In addition to confirming the low threshold for tolerating moderate adverse events in a predominantly older adult population, several surveys of patients and providers have underscored the ambiguity in describing MDS as a myeloid malignancy and a reluctance to offer disease-modifying treatments based on risk analysis (Kurtin & Demakos, 2010;Sekeres, 2011;Sekeres et al, 2011). As a result, patients often are unable to describe the characteristics of their disease, including their International Prognostic Scoring System risk category, blasts percentage, cytogenetic abnormalities, and how these attributes correlate with their treatment options and prognosis (Demakos & Kurtin, 2011;Sekeres et al, 2011). A minority of patients in these surveys had been told that MDS is a malignant disorder.…”