Wearing-Off Effect Toward the End of Treatment Cycles in Patients With MS Receiving High-Efficacy Disease-Modifying Therapies: Data From Social Media Listening
Ivan John Clement1, Joanne Fielding2, Marie Serceau3, Janine Robinson3, Chinmay Deshpande1
1Novartis Pharma AG, 2Department of Neuroscience, Faculty of Medicine, Nursing and Health Sciences, Monash University, 3Real Chemistry
Objective:
To explore how various stakeholders (patients living with multiple sclerosis [PlwMS], caregivers [CGs], health care practitioners [HCPs], advocacy groups) describe symptoms, timing, coping strategies, and impact on quality of life (QoL) of the wearing-off effect (WOE) while receiving disease-modifying therapies (DMTs; natalizumab, ocrelizumab, ofatumumab, rituximab).
Background:
Symptoms such as fatigue, mobility issues, and physical pain toward the end of treatment cycles (WOE) have been reported in PlwMS receiving DMTs. Patients on social media report a QoL impact associated with WOE.
Design/Methods:
Publicly available posts related to WOE on social media, blogs, and forums were reviewed. WOE-specific posts authored in English by key stakeholders and posted between February 1, 2020 and February 16, 2022 were analyzed. Posts were identified through a specific search term–based funneling methodology.
Results:
We identified 43,834 posts related to broader MS and WOE; 730 conversations were WOE specific, with 725 authored by PlwMS or CGs. Of these 725 posts, 535 were related to experiencing WOE and 277/535 posts mentioned WOE-associated symptoms. The most commonly reported WOE durations were 2-4 weeks; fatigue was the most mentioned symptom, followed by mobility issues and physical pain. Treatment was specified in 374/535 posts; 9% of these mentioned a QoL impact, such as need for more downtime, interference with work, and difficulty walking. WOE coping strategies mentioned by patients included switching to other DMTs, reducing intervals between cycles, and taking steroids/other medications. WOE-related conversations by HCPs and advocacy groups were scarce (4 and 1 posts, respectively).
Conclusions:
Mentions of WOE by patients receiving DMTs and reports of WOE-related symptoms impacting QoL were common. Factors like differing DMT durations and numbers of patients receiving different DMTs make observations of social media conversations prone to an inherent bias. Further research regarding WOE and potential gaps between HCP and patient perceptions/awareness of WOE is needed.