Use of an educational guide to myelodysplastic syndromes (MDS) appeared to significantly improve understanding of MDS among learners, according to a recent study. The findings of this study were reported in the journal Leukemia Research Reports.

MDS is a heterogeneous set of malignancies and much remains to be understood about these conditions. Patients with MDS often are limited in their awareness of the disease, prognosis, and goals of treatment, the study investigators explained in their report. They also noted that health literacy in general seems to be an important factor in health outcomes. In this retrospective study, the researchers had an aim of assessing the impact of modules from the You and MDS: An Animated Patient’s Guide to MDS educational program on learner utilization and outcomes.

The educational modules were developed by the MDS Foundation and the foundation’s scientific advisors, and they are accessible online. In this retrospective study, the researchers evaluated user engagement with the modules, including details such as number of visit sessions, unique visitors, and type of media viewed. Media types included animations, expert videos, patient videos, and slide shows. Educational impacts of the program were evaluated in analyses based on user metrics and data from feedback surveys. Data were collected from the period of July 2018 to August 2021.

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The educational system had a total of 233,743 views globally. Unique visitors totaled 104,214, from among 141 nations. In the US, there were 79,203 unique visitors, representing 76% of total unique visitors. There were 1850 participants who responded to surveys. Of these, 61% identified themselves as patients with MDS, 29% identified themselves as family or caregivers, 5% identified as healthcare providers, and the remaining 5% identified as “other.”

Overall, across the videos, a mean of 70.1% of each video’s content was watched. The most popular animation viewed in the program was called “Understanding Myelodysplastic Syndromes (MDS),” which had received 40,219 views at the time of the report’s writing. This was followed in popularity by “Managing and Treating MDS” with 19,240 views and “Understanding Erythropoiesis” with 17,564 views.

Among expert videos, “What is iron overload, and how it is treated?” appeared most popular with 20,310 views. Other popular expert videos included “How serious a cancer is MDS? What is the prognosis for MDS?” with 8,327 views and “What is MDS?” with 3,157 views.

Among survey respondents who provided feedback on the program, approximately 95% indicated they learned new information about MDS. Most participants (96%) expressed an intent to use the information they learned in MDS management.

The study investigators concluded that the patient guide “demonstrates wide reach, and has vast potential to improve understanding and benefit health outcomes by informing MDS patients, families, and caregivers.”


Sallman DA, Bejar R, Montalban-Bravo G, et al. Improving patient understanding and outcomes in myelodysplastic syndromes – an animated patient guide to MDS with visual formats of learning. Leuk Res Rep. 2022;17:100328. doi:10.1016/j.lrr.2022.100328