TY - JOUR
T1 - Myeloproliferative neoplasm questionnaire
T2 - assessing patient disease knowledge in the modern digital information era
AU - Pemmaraju, Naveen
AU - Wilson, Nathaniel R.
AU - Clementi Doan, Theresa
AU - Qiao, Wei
AU - Peterson, Susan K.
AU - Zoeller, Vicky
AU - Schorr, Andrew
AU - Verstovsek, Srdan
N1 - Funding Information:
This research is supported in part by the MD Anderson Cancer Center Support [Grant P30 CA016672] and the SagerStrong Foundation.
Publisher Copyright:
© 2021 Informa UK Limited, trading as Taylor & Francis Group.
PY - 2021
Y1 - 2021
N2 - 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.
AB - 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.
KW - Myeloproliferative neoplasms
KW - data sharing
KW - patient education
KW - social media
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U2 - 10.1080/10428194.2021.1901096
DO - 10.1080/10428194.2021.1901096
M3 - Article
C2 - 33749512
AN - SCOPUS:85102954000
SN - 1042-8194
VL - 62
SP - 2253
EP - 2260
JO - Leukemia and Lymphoma
JF - Leukemia and Lymphoma
IS - 9
ER -