A Patient-Centered education through Massive Open Online Course (MOOC) for Multiple Myeloma: A Descriptive Study of Knowledge Gains by AF3M and IFM (Preprint)

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. CLINICALTRIAL NA