Perceptions of disease state, treatment outcomes, and prognosis among patients with myelodysplastic syndromes: results from an internet-based survey.

ABSTRACT:

Purpose

Myelodysplastic syndromes (MDSs) are a heterogenous group of clonal hematopoietic disorders affecting approximately 60,000 people in the U.S. Little information is available regarding how aware MDS patients are of their disease severity, prognosis, and treatment outcomes.

Methods

This Internet-based survey assessed patient perceptions regarding these factors, determined differences between patients with higher- and lower-risk disease and between those receiving active treatment and supportive care, and assessed patient-reported outcomes.

Results

Among 358 patients (median age, 65 years), the median time since MDS diagnosis was 3 years and time from initial hematologic abnormality detection was 6 years. Many patients (55%) did not know their International Progn

SUBMITTER: Sekeres MA 

PROVIDER: S-EPMC3228221 | biostudies-literature | 2011

REPOSITORIES: biostudies-literature