-Author name in bold denotes the presenting author
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1664 Improving Understanding of MDS Using an Animated Patient’s Guide to Benefit Patient Health Outcomes

Program: Oral and Poster Abstracts
Session: 906. Outcomes Research—Malignant Conditions (Myeloid Disease): Poster I
Hematology Disease Topics & Pathways:
Adult, Diseases, Bone Marrow Failure, Elderly, MDS, Study Population, Myeloid Malignancies, Clinically relevant, Quality Improvement
Saturday, December 5, 2020, 7:00 AM-3:30 PM

David A. Sallman, MD1,2, Tracey Iraca3*, Casey L. O'Connell, MD4, Rafael Bejar, MD, PhD5 and Sandra Kurtin, ANP6

1H. Lee Moffitt Cancer Center and Research Institute, Tampa, FL
2H. Lee Moffitt Cancer Center, Tampa, FL
3MDS Foundation, Inc., Yardville, NJ
4University of Southern California, Los Angeles, CA
5Moores Cancer Center, University of California, San Diego, La Jolla, CA
6The University of Arizona Cancer Center, Tucson, AZ


Patients with MDS continue to report gaps in knowledge, particularly where understanding of disease risk, prognosis and treatment options are concerned.1 A recent online social media survey on experiences in myelodysplastic syndromes revealed that patients/caregivers’ (n=127) have a general lack of information about MDS and insufficient knowledge regarding treatment options and are unable to make fully informed decisions.2 Efforts to improve patient and caregiver understanding of MDS, including treatment options, are critical to individualized treatment planning and shared decision-making. MDS patients commonly use multimedia and online resources to seek disease information.3 The MDSF introduced an online ‘animated,’ visual format educational program in July 2018 aimed at improving patient and caregiver knowledge.4 Evaluation of this project, including determining changes in patient knowledge and intent-to-implement a change in behavior are described as parameters of advancing and benefiting health outcomes.


An Animated Patient’s Guide to MDS (APG), a multimedia educational initiative was launched globally in July 2018. Recruitment was conducted via search engine marketing, social media promotions and email campaigns to MDS patients, caregivers and oncology provider audiences. Video views, duration of use, and learner responses to questions on the APG website were collected from July 2018 to July 2020 (24 months). Total APG views, most frequently viewed MDS animations and MDS expert videos were monitored on the website and on You Tube, to measure learner responses to outcome-based questions, and learner intent-to-implement changes.


A total of 151,231 views, including 58,947 unique visitors visited the APG online resource. Of these, 81% were from the U.S. and 19% from other countries (> 50 countries). Unique visitors from U.S. consisted of 28,171 patients, 15,279 family/caregivers, and 1,910 health providers. Among responses indicating a ‘commitment to change’, 96% reported they will ‘use new information learned to better self-manage their MDS’ (n = 917), 93% reported they ‘will discuss information learned with their doctor’ (n = 355), and 97% reported they ‘plan to discuss MDS treatment options with their doctor’ (n = 734). Patients who reported they ‘learned new information about MDS’ identified that they ‘learned new general information about MDS’ (95%, n = 193), ‘learned new information about the diagnosis of MDS’ (86%, n = 195), ‘learned about new treatment options for MDS’ (89%, n = 195), ‘learned about new information related to bone marrow transplant in MDS’ (85%, n = 177) and intended to ‘ask their doctor about how to take part in healthcare decisions’ (96%, n = 187).


Multimedia education, including visual ‘animated’ formats, tailored to the needs of MDS patients has the potential to provide effective learning, increase knowledge and improve engagement in shared decision-making. Ongoing monitoring and further analysis of this multimedia educational resource for MDS patients will be necessary to understand how tailored education provided via this format impacts and benefits patient health outcomes.


  1. Kurtin, S., Chang, E., & Bently, T. (2015). MDS patient characteristics associated with use of disease-modifying therapy: results of a patient survey. The International MDS Symposia, Washington, D.C.
  2. Booth, A., Bell, T., Halhol, S., Pan, S., Welch, V., Merinopoulou, E., Lambrelli, D., Cox, A. Using Social Media to Uncover Treatment Experiences and Decisions in Patients with Acute Myeloid Leukemia or Myelodysplastic Syndrome Who Are Ineligible for Intensive Chemotherapy. J Med Internet Res 2019 Nov; 21(11) e-14285
  3. Kurtin, S., Harrison, L., Iraca, T., Hassan, A., Nichols, A. Health Technology Engagement and Communicative Health Literacy in Older Adults MDS Patients. Myelodysplastic Syndromes, 15th International Symposia on Myelodysplastic Syndromes. Copenhagen. May 8-1, 2019. Poster presentation.
  4. MDS Foundation, Inc. and Mechanisms in Medicine Inc. (2019-06-26). You And MDS: An Animated Patient’s Guide to Myelodysplastic Syndromes. www.YouAndMDS.com

Disclosures: Sallman: Agios, Bristol Myers Squibb, Celyad Oncology, Incyte, Intellia Therapeutics, Kite Pharma, Novartis, Syndax: Consultancy; Celgene, Jazz Pharma: Research Funding. Iraca: MDS Foundation: Membership on an entity's Board of Directors or advisory committees. Bejar: Celgene/BMS: Honoraria, Research Funding; Forty-Seven/Gilead: Honoraria; Genoptix/NeoGenomics: Honoraria; AbbVie/Genentech: Honoraria; Daiichi-Sankyo: Honoraria; Aptose Biosciences: Current Employment; Takeda: Honoraria, Research Funding; Astex/Otsuka: Honoraria. Kurtin: MDS Foundation: Membership on an entity's Board of Directors or advisory committees.

*signifies non-member of ASH