Myeloproliferative neoplasm questionnaire: assessing patient disease knowledge in the modern digital information era. Issue 9 (29th July 2021)

• Record Type: Journal Article
• Authors: Pemmaraju, Naveen; Wilson, Nathaniel R.; Clementi Doan, Theresa; Qiao, Wei; Peterson, Susan K.; Zoeller, Vicky; Schorr, Andrew; Verstovsek, Srdan
• Is Part Of: Leukemia & lymphoma. Volume 62:Issue 9(2021)
• Page Start: 2253
• Page End: 2260
• Publication Date: 2021-07-29
• Subjects: Myeloproliferative neoplasms -- social media -- patient education -- data sharing; Leukemia -- Periodicals; Lymphomas -- Periodicals; 616.99419
• DOI: 10.1080/10428194.2021.1901096
• Languages: English
• ISSNs: 1042-8194

Abstract

Abstract: There is growing Internet and social media use among patients with rare blood cancers, notably myeloproliferative neoplasms (MPNs). A 38-item online questionnaire was developed to assess patients' ( n = 983) disease understanding and use of online resources regarding MPN. Many responders (74%) reported unawareness of additional mutations beyond their primary molecular marker(s); 32% were unsure of their prognostic risk stratification. Additionally, 89% reported using online resources (Facebook (61%); Google/Google+ (42%); YouTube (34%); blogs (26%); Twitter (5%)) to seek information about MPN. Despite this, results showed many gaps in patients' basic disease knowledge. Our findings suggest an important difference in social media habits between physicians and patients: physicians are rapidly adopting Twitter as their preferred medium for sharing medical knowledge; however, patients often prefer other social mediums. Educational campaigns should be designed in more personalized ways, aiming to fit a variety of online platforms to maximize reach and impact for patients with MPN.