DOI: 10.6084/m9.figshare.28760705
title: Social media listening study to understand the journey and unmet needs of patients living with post-stroke spasticity

description: 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. A subset of 417 patient-centric PSS-related posts published on major social media platforms was identified for analysis from 31 600 retrieved. 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. 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. Social media listening can be used to uncover insights from patients with post-stroke spasticity, including their experiences, their unmet needs, and the impact of the disease on their quality of life.Effective screening tools to identify patients who are at risk of developing a disabling spasticity are essential, as is good communication and interactions between patients and healthcare practitioners (HCPs) specialising in spasticity management, to ensure timely diagnosis and initiation of early treatment.Good communication and interactions between patients and HCPs specialising in spasticity management will also improve patient satisfaction and confidence.It is important that healthcare professionals manage patients’ expectations of treatment and work with their patients to set realistic and achievable treatment goals using initiatives that emphasise the importance of goal setting as part of the post-stroke rehabilitation journey and highlight the need to tailor treatment to fit patients’ specific needs and address their priorities. Social media listening can be used to uncover insights from patients with post-stroke spasticity, including their experiences, their unmet needs, and the impact of the disease on their quality of life. Effective screening tools to identify patients who are at risk of developing a disabling spasticity are essential, as is good communication and interactions between patients and healthcare practitioners (HCPs) specialising in spasticity management, to ensure timely diagnosis and initiation of early treatment. Good communication and interactions between patients and HCPs specialising in spasticity management will also improve patient satisfaction and confidence. It is important that healthcare professionals manage patients’ expectations of treatment and work with their patients to set realistic and achievable treatment goals using initiatives that emphasise the importance of goal setting as part of the post-stroke rehabilitation journey and highlight the need to tailor treatment to fit patients’ specific needs and address their priorities.