Evidence map›Paper›PMID 35663282›Full record

ArticleLeukemia research reports2022

Improving patient understanding and outcomes in myelodysplastic syndromes - An animated patient guide to MDS with visual formats of learning.

David A Sallman, Rafael Bejar, Guillermo Montalban-Bravo, Sandra E Kurtin, Alan F List, Guillermo Garcia-Manero, Stephen D Nimer, Casey L O'Connell, Dale Schaar, Janice Butchko and 2 more

Open access · goldAbstract read
In one paragraph

Article in Leukemia research reports, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
1.1field-weighted citation impact, top 21% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

3 citing papers in PubMed, 5 citations in OpenAlex.

  1. Understanding Physician Referral for Chimeric Antigen Receptor T-Cell (CAR-T) Therapy.Journal of cancer education : the official journal of the American Association for Cancer Education · 2026
    Article
  2. Article
  3. Myelodysplastic syndromes: A primary care perspective.South African family practice : official journal of the South African Academy of Family Practice/Primary Care · 2025
    Review
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

12 authors at 9 institutions in 1 country.

David A SallmanDepartment of Malignant Hematology, Moffitt Cancer Center Tampa, FL, United States.
Rafael BejarDivision of Hematology and Oncology, MDS Center of Excellence, University of California, San Diego La Jolla, CA, United States.
Guillermo Montalban-BravoDepartment of Leukemia, University of Texas MD Anderson Cancer Center Houston, TX, United States.
Sandra E KurtinUniversity of Arizona Cancer Center, University of Arizona Tucson, AZ, United States.
Alan F ListPrecision BioSciences Durham, NC, United States.
Guillermo Garcia-ManeroDepartment of Leukemia, University of Texas MD Anderson Cancer Center Houston, TX, United States.
Stephen D NimerDepartment of Medicine, Biochemistry & Molecular Biology, University of Miami Miller School of Medicine, Sylvester Comprehensive Cancer Center Miami, FL, United States.
Casey L O'ConnellJane Anne Nohl Division of Hematology, University of Southern California Los Angeles, CA, United States.
Dale SchaarRutgers Cancer Institute of New Jersey New Brunswick, NJ, United States.
Janice ButchkoMDS Foundation, NJ, United States.
Tracey IracaMDS Foundation, NJ, United States.
Stephanie SearleMechanisms in Medicine Inc., Toronto, ON, Canada.
MDS Associates (United States) · USThe University of Texas MD Anderson Cancer Center · USMoffitt Cancer Center · USPrecision BioSciences (United States) · USRutgers, The State University of New Jersey · USUniversity of Arizona · USUniversity of California San Diego · USUniversity of Miami · USUniversity of Southern California · US

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Objectives: Patient education resources that address barriers to health literacy to improve understanding and outcomes in myelodysplastic syndromes (MDS) are limited. The aim of this study was to evaluate the impact and outcomes benefits of Methods: This was a retrospective study of learner feedback, metrics, and utilization data from July 2018 to August 2021. We evaluated audience reach (number of visit sessions, unique visitors, page views) and calculated top views by media type (animation, expert video, patient video, and slide show) and top retention videos from the modules. We also assessed the educational impact and utilization through learner feedback surveys. Results: During the study period, 'You and MDS' had 233,743 views worldwide of which 104,214 were unique visitors and 78,161 (or 76% unique visitors) were from the United States. Of these, 61% were patients; 29% family members or caregivers; 5% were healthcare providers and 5% represented other groups. Most popular topics viewed among the animations were "Understanding Myelodysplastic Syndromes (MDS)" (40,219 views), "Managing and Treating MDS" (19,240 views), "Understanding Erythropoiesis" (17,564 views.) The most popular expert videos viewed were "What is iron overload, and how it is treated?" (20,310 views), "How serious a cancer is MDS? What is the prognosis for MDS?" (8,327 views), "What is MDS?" (3,157 views). Of participants who completed the online feedback survey, ≥ 95% reported improved knowledge gains and commitments to change. Conclusions: MDS patients using 'You and MDS - An Animated Patient's Guide to MDS' and its visual formats of learning represented a wide U.S. and global learner audience. This MDS educational resource had a significant impact on improved understanding among patients, families, and caregivers. Continued efforts should be made to provide patient-effective resources that address health literacy, improve patient understanding, and address educational needs that respond to the concerns of patients to achieve better quality of life and improved health outcomes in MDS.

Indexed as

Health literacyHealth outcomesMyelodysplastic syndromesPatient educationVisual formats of learning

Identifiers

PMID35663282
PMCPMC9160489
OpenAlexW4281490630

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.