Disparity in Perceptions of Disease, Treatment Effectiveness and Treatment Adherence Between Physicians and Patients with Myelodysplastic Syndromes (MDS)

Previous studies have suggested that many patients (pts) with MDS have incomplete understanding of their disease and its treatment. In addition, contemporary drug therapies (tx) for MDS often require repeated treatment administration cycles to achieve clinical effect, and premature discontinuation or incomplete adherence may result in lack of benefit in pts who might have responded to a longer course of tx. In order to better understand physician and pt perceptions about MDS and decisions about continuing tx, we conducted two online surveys in February 2012: one for pts with MDS and one for healthcare providers (HCP) registered with the Aplastic Anemia & MDS International Foundation. A $50 Amazon gift card was offered to the first 200 respondents in each group; acceptance constituted consent. The protocol was approved by a central Institutional Review Board. Pt and HCP surveys consisted of 57 and 49 questions, respectively, assessing understanding of MDS, perceptions of specific tx, perceived barriers to tx adherence, and overall tx experience. Data were analyzed using proportions, means and medians, and comparisons between groups were calculated using Pearson's Chi square where appropriate.

477 complete pt responses were received from 42 US States, as well as 120 complete HCP responses. Of pt responders, 247 (52%) were men, 63% were ≥60 years old, and the median time from MDS diagnosis was 5 years (range, 0–32 years). Because of low participation among other HCP groups, only physician (MD) responses are analyzed here. Of the 61 physicians (from 23 US states), 35 (57%) practice in an academic setting and 26 (43%) in the community setting; 48% reported they see 5–19 new MDS pts per year. Survey responses from academic and community physicians did not differ significantly.

Only 10% of pts reported agreement that MDS is a “cancer”, compared to 59% of physicians (p<. 001). Only 29% of pts report that MDS is a “curable” condition, compared to 52% of physicians (p<. 001). Forty-two percent of patients had received at least one active tx: azacitidine (AZA, 58%), decitabine (DAC, 27%), lenalidomide (LEN, 35%) or hematopoetic stem cell transplant (HSCT, 26%) (total >100% due to multiple answers). Physicians and pt perceptions of specific active tx were significantly different, especially regarding quality of life (QOL), adverse events and impact of tx on pt activities. [Table 1]. Physicians viewed the potential benefits of active tx significantly greater than did pts, however pts perceived the actual tx experience more positively than doctors. [Table 2]

Sixty-nine percent of physicians reported recommending stopping tx prior to the completion of a planned tx course, most commonly due to adverse events and the burden of therapy outweighing benefit. [Table 3]

Physicians and pts with MDS have disparate views of MDS characteristics and the value and limitations of tx for MDS. Improved communication and education may increase understanding of disease and achieve better results, including greater treatment adherence.

Huber:Celgene: Research Funding, This study was funded by an unrestricted grant from Celgene to the AA&MDS IF. Other. Dennison:Celgene: Research Funding.