Knowledge That the Myelodysplastic Syndromes (MDS) Are a Type of Cancer Does Not Influence Patient Perception of Treatment Discontinuation

Background: MDS is often described to patients (pts) with a diverse lexicon of terms such as refractory anemia, pre-leukemia, and blood disorder. Although MDS have long been recognized as clonal disorders and are classified as neoplastic by the World Health Organization and by cancer registries, MDS are infrequently described as a cancer to patients (e.g., Sekeres et al Oncologist 2011). Education about the nature of MDS may change pts' perception of MDS thereby influencing information gathering, disease knowledge, and treatment (tx) patterns.

Methods: We conducted a 67 question online survey between February and April 2014 of MDS pts registered with the Aplastic Anemia & MDS International Foundation assessing understanding of MDS and factors leading to tx decisions. The protocol and consent were approved by a central IRB. Data were analyzed using proportions, means and medians, and comparisons between groups were calculated using Pearson's Chi square.

Results: Of 4,129 pts invited to participate via e-mail, 314 (8%) complete responses were received from 39 US States: 165 (53%) were men; 67% were age 60 years or older; 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 (hypomethylating agents (HMA): azacitidine and decitabine; or lenalidomide). Of respondents, only 69 (22%) reported that their MDS was initially described to them as a cancer (CA).

Although the two groups has similar distributions of disease risk, when MDS was labeled as CA, pts were more likely to know their International Prognostic Scoring System score compared to other MDS pts (67% vs. 51%, P=.035). However, in pts reporting having a bone marrow biopsy, rates of recalling most recent blast percentage (76% vs. 73%, P=.77) and cytogenetics (abnormal or normal, 80% vs. 72%, P=.20) were similar regardless weather or not pts recalled MDS besting described as cancer.

A large number of web-based resources were used both by those whose MDS was described as CA (median 4, range 1-14) and those who did not recall MDS described as cancer (median 3, range 1-10; P=.71). Notably, recalling having MDS described as CA led to a larger proportion of pts using NCI's cancer.gov (32% vs. 18%, P=.015) and NMDP's bethematch.org (30% vs. 19%, P=.037) sites.

Recalling MDS being described as a CA did not impact the median number of cycles of ESA (16 vs. 16, P=.46) HMA (6 vs. 7, P=.17) or lenalidomide (5.5 vs. 4, P = 0.81) that pts received (Table 1). When tx discontinuation was initiated by pts, both those who did recall and did not recall MDS described as CA cited similar reasons in the domains of finances, logistics, perception, quality of life, side effects, disease progression, and health deterioration (Table 2). For both groups the primarily reason cited for tx discontinuation was that the tx was no longer working (53% and 50%, respectively, P=.78).

Conclusion: The knowledge that MDS is a CA made pts more acutely aware of their disease risk and influenced where they searched for online information. Identifying MDS as a CA did not impact treatment persistence or reasons for tx discontinuation, suggesting that education on the importance of tx persistence is more important than understanding the malignant nature of the disease.