Social media listening study to understand the journey and unmet needs of patients living with post-stroke spasticity

Purpose: Stroke survivors may develop spasticity (post-stroke spasticity [PSS]) that can challenge activity and participation. Recognising the needs and expectations of people with PSS is crucial for enhancing care. This study is the first to employ social media listening to explore the experiences, unmet needs, and quality of life (QoL) of people with PSS. Materials and methods: A subset of 417 patient-centric PSS-related posts published on major social media platforms was identified for analysis from 31 600 retrieved. Results: Posts mainly discussed patient journey (centred around treatment options and management techniques), the impact of PSS on QoL, and patient interactions with healthcare practitioners (HCPs). Widely used treatment options had associated negative sentiments due to perceived inefficacy and lack of long-term effectiveness (botulinum neurotoxin) or side effects (oral anti-spasticity medications). Perceptions of treatment options and expected treatment outcomes influenced satisfaction with treatment and HCP interactions. Poor perceived treatment efficacy generally resulted in dissatisfaction with HCP interactions and seeking peer opinions online. Identified unmet needs focused on need for satisfactory treatment options, well-informed HCPs, and better patient education. Conclusions: The study highlights the need for improved education for patients, caregivers, and HCPs regarding PSS and better communication between patients and HCPs to manage treatment expectations.