Sallman David A, Bejar Rafael, Montalban-Bravo Guillermo, Kurtin Sandra E, List Alan F, Garcia-Manero Guillermo, Nimer Stephen D, O'Connell Casey L, Schaar Dale, Butchko Janice, Iraca Tracey, Searle Stephanie
Department of Malignant Hematology, Moffitt Cancer Center Tampa, FL, United States.
Division of Hematology and Oncology, MDS Center of Excellence, University of California, San Diego La Jolla, CA, United States.
Leuk Res Rep. 2022 May 25;17:100328. doi: 10.1016/j.lrr.2022.100328. eCollection 2022.
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 cancer educational modules (which includes the 'You and MDS' website and YouTube hosted resources) related to MDS education, awareness, understanding and health outcomes.
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.
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.
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.
针对健康素养障碍以提高骨髓增生异常综合征（MDS）认知度及改善预后的患者教育资源有限。本研究旨在评估与MDS教育、认知、理解及健康预后相关的癌症教育模块（包括“You and MDS”网站及YouTube上的资源）的影响及预后效益。
这是一项对2018年7月至2021年8月学习者反馈、指标及使用数据的回顾性研究。我们评估了受众覆盖面（访问会话数、独立访客数、页面浏览量），并按媒体类型（动画、专家视频、患者视频及幻灯片）计算了热门观看量及模块中热门留存视频。我们还通过学习者反馈调查评估了教育影响及使用情况。
在研究期间，“You and MDS”在全球有233,743次观看量，其中104,214次为独立访客，78,161次（占独立访客的76%）来自美国。其中，61%为患者；29%为家庭成员或护理人员；5%为医疗保健提供者，5%代表其他群体。动画中观看量最高的主题是“了解骨髓增生异常综合征（MDS）”（40,219次观看）、“管理和治疗MDS”（19,240次观看）、“了解红细胞生成”（17,564次观看）。观看量最高的专家视频是“什么是铁过载，如何治疗？”（20,310次观看）、“MDS作为癌症有多严重？MDS的预后如何？”（8,327次观看）、“什么是MDS？”（3,157次观看）。在完成在线反馈调查的参与者中，≥95%报告知识有所增加并承诺做出改变。
使用“You and MDS - 一本面向MDS患者的动画指南”及其可视化学习形式的MDS患者代表了广泛的美国及全球学习者群体。这种MDS教育资源对提高患者、家庭及护理人员的理解有显著影响。应继续努力提供有效的患者资源，以解决健康素养问题，提高患者理解，并满足患者关注的教育需求，从而在MDS中实现更好的生活质量及改善健康预后。
