Accepted for/Published in: JMIR Formative Research
Date Submitted: Aug 7, 2025
Date Accepted: Oct 31, 2025
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
A Patient-Centered education through Massive Open Online Course (MOOC) for Multiple Myeloma: A Descriptive Study of Knowledge Gains by AF3M and IFM
ABSTRACT
Background:
Multiple myeloma (MM) is a chronic hematological malignancy associated with complex treatments, frequent relapses, and substantial information needs. Digital education tools such as Massive Open Online Courses (MOOCs) represent innovative approaches to enhance patient knowledge and self-management.
Objective:
To develop and evaluate a MOOC co-designed with patients and healthcare professionals, aimed at improving knowledge, skills, and empowerment in individuals living with MM and their caregivers.
Methods:
The MOOC "Understanding and Living with Myeloma" was created by the French Association of Patients with Multiple Myeloma (AF3M) in collaboration with the Francophone Myeloma Intergroup (IFM). It included five thematic modules delivered over eight weeks, combining videos, quizzes, peer-tutoring, and live web conferences. Knowledge was self-assessed by participants before and after the program using a 52-item questionnaire scored from 1 (poor knowledge) to 5 (excellent knowledge).
Results:
A total of 2,400 participants enrolled across six sessions. Among participants who completed the program (n=76), mean knowledge scores improved from 3.06/5 pre-test to 4.21/5 post-test (+1.15 (38%), P<.0001). Additionally, 98% of respondents reported being very satisfied with the MOOC, and 98.7% would recommend it to other patients
Conclusions:
This MOOC significantly improved knowledge about MM and was highly valued by participants. It complements medical consultations by providing accessible, free, repeatable, and peer-supported education. This initiative could serve as a model for developing digital education tools in other chronic diseases. Clinical Trial: NA
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