Online educational program improves patient understanding of myelodysplastic syndromes

According to a study published in Leukemia Research Reports.

Patients with MDS are often limited in their knowledge of the disease, prognosis and treatment goals, the study researchers explained in their report. They also noted that general health literacy appears to be an important factor in health outcomes. In this retrospective study, the researchers sought to assess the impact of the modules of the You and MDS: An Animated Patient Guide to MDS educational program on learner use and outcomes.

The educational modules were developed by the MDS Foundation and the Foundation’s scientific advisors and are available online. The researchers assessed 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 slideshows. The educational impacts of the program were assessed in analyzes based on user metrics and feedback survey data. The data was collected over the period from July 2018 to August 2021.

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The education system totaled 233,743 views worldwide. Unique visitors totaled 104,214 from 141 nations. In the United States, there were 79,203 unique visitors, representing 76% of the total number of unique visitors. There were 1850 participants who completed the surveys. Of these, 61% identified themselves as patients with MDS, 29% identified themselves as family members or caregivers, 5% as healthcare providers, and the remaining 5% as “other” .

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

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

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

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


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 learning formats. Leuk reserve representative. 2022;17:100328. doi:10.1016/j.lrr.2022.100328

This article originally appeared on Hematology Advisor

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