Objective: To employ social media listening to uncover insights into poststroke spasticity (PSS) patient experiences, unmet needs, and impact on quality of life.

Background: PSS affects up to 40% of people after stroke and recognizing PSS patients’ needs is crucial for enhancing care.¹

Method: With guidance from an expert advisory board, Boolean queries were developed to capture patient-centric discussions on major social platforms in four countries (France, Germany, UK, US) between June 2021‒2023. Manual and automated algorithms and a comprehensive manual thematic analysis were used to identify patient-centric insights; these were reviewed by the advisory board for clinical accuracy and relevance.

Results: From 31,600 reviewed posts, a qualified subset of 417 posts were identified for content analysis. Patients mainly discussed journey stages (n=395/417, 95%), impact on their quality of life (n=237/417, 57%), and interactions with healthcare practitioners (HCPs, n=129/417, 31%). Patient journey posts were centered around treatment options (n=278/395, 70%) and management techniques (n=118/395, 30%). Widely used treatment options, botulinum neurotoxin (BoNT) (n=103/278, 37%) and oral medications (n=71/278, 26%) were associated with high negative sentiment, 34% and 44% respectively, due to perceived (long-term) inefficacy (BoNT) and severe side effects (oral medications). Exercise (n=64/118, 54%) was the most adopted management technique. Patient emotions transitioned from fear and worry before PSS diagnosis to hope and determination during the treatment stage. Patients were most vocal about the physical (n=213/237, 90%), followed by the emotional impact (n=95/237, 40%), of the condition. Patients generally expressed dissatisfaction (n=62/129, 48%) with their interactions with HCPs and sought online peer opinions when treatment options were effective. In 44% (183/417) of conversations, an unmet need was identified, mainly for satisfactory treatment options (n=78/183, 43%), well-informed HCPs (n=38/183, 21%), and better patient education about the condition (n=27/183, 15%).

Conclusion: Findings from this study highlight the need for improved education for patients, caregivers and HCPs regarding PSS, better communication between patients and HCPs, and management of treatment expectations.

Previously presented at TOXINS 2024, 17-20 January.

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References: 1. Jacinto J, Lysandropoulos A, Leclerc M, Calvi-Gries F. Experiences of patients with poststroke spasticity throughout a botulinum toxin treatment cycle: Results from a prospective ethnographic study. Front Neurol. 2022;13:946500. doi:10.3389/fneur.2022.946500

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MDS Abstracts - https://www.mdsabstracts.org/abstract/social-media-listening-study-to-understand-the-journey-and-unmet-needs-of-patients-living-with-pss/