Doctor-Patient Communication and Perception of Treatment Discontinuation in Myelodysplastic Syndromes (MDS) Diverge at the Time of Disease Progression

Background: MDS are a complex collection of diseases described with terminology that can be confusing for patients (pts) and limited treatment (tx) options. We previously reported on disparities in perceptions of disease characteristics and outcomes between physicians (MDs) and pts (Steensma et al Cancer 2014) at the time of diagnosis. In the current study, we examined gaps in communication between pts and MDs and tx discontinuation patterns throughout the disease course.

Methods: We conducted two online surveys between February and April 2014 of MDS pts and MDs registered with the Aplastic Anemia & MDS International Foundation. Pt and MD surveys were 67 and 61 questions, respectively, assessing understanding of MDS, communication between MDs and pts, and factors leading to tx discontinuation. The protocol and consent were approved by a central IRB.

Results: Of 4,129 pts invited via e-mail, 314 complete responses were received from 39 US States for an expected response rate of 8%: 53% were men; 67% were age ³60 years; pts were diagnosed with MDS a median of 5 years prior to the survey (range, 0-28 years) with 35% reporting prior tx with an erythropoiesis-stimulating agent (ESA) and 46% with disease-modifying therapy (DMT: azacitidine, decitabine, or lenalidomide). Of 51 MDs providing complete responses (from 19 US states), 29 (57%) practice in an academic setting and 22 (43%) in a community setting. MDs reported seeing a mix of lower (46%) and higher-risk (54%) cases; 37% reported seeing 5-19 unique patients yearly.

Although pts and MDs both reported high rates of education about their disease being provided at the time of diagnosis (Table 1), 78% of MDs reported describing MDS as a cancer, but only 22% of patients recall MDS being described as a cancer (P<.001). Likewise, 76% of MDs reported discussing disease risk by IPSS or IPSS-R with their patients, yet only 55% of pts recalled their IPSS/IPSS-R risk category (P=.004), though both an increase in comparison to past surveys.

At the start of tx, 83% of pts and 94% of MDs reported discussing tx goals (P=.039), whereas a minority of pts reported receiving disease or tx education at the time of tx change (26%, vs. 47% for MDs, P=.002) or at disease progression (18%, vs. 55% for MDs, P<.001,Table 1). Reasons cited for tx discontinuation differed between pts and MDs. For ESAs, pts were more likely to report that the tx stopped working (68% vs. 29% for MDs, P<.001), where MDs were more likely to cite disease progression (91% vs, 34% for pts, P<.001) and health deterioration (67% vs. 15% for pts, P<.001). Similar patterns held for DMT discontinuation, with physicians more likely to report discontinuation due to disease progression (96% vs. 34% for pts, P<.001) and health deterioration (71% vs. 28% for pts, P<.001).

Conclusion: Disease and tx education decline over a pt's disease course. Additionally, at the time of tx discontinuation, MDs are more likely to cite pt or disease factors as justification, whereas pts are more likely to attribute tx cessation to ineffectiveness of therapy. Pts may not understand that their disease is progressing, which in MDS, always indicates a median survival of less than 1.5 years. This, in turn, can affect the likelihood that pts will be referred for or agree to participate in clinical trials, and explore additional lines of tx. Improved communication of disease risk at the time of diagnosis and disease characteristics at the time of tx conclusion, may lead to improved tx persistence and increase enrollment in clinical trials.