Understanding the Experiences of Young People Living With Haemophilia-A UK Social Media Study.

INTRODUCTION: Haemophilia is a rare congenital bleeding disorder that presents significant physical and psychological challenges, especially for young people, with limited real-world evidence about their experiences in the UK. AIM: This study sought to understand the perspectives and challenges of young people living with haemophilia in the UK by analysing social media conversations. METHODS: A retrospective qualitative study using social media listening was conducted, analysing publicly accessible UK-based posts from September 2021-September 2024. Data collection and thematic analysis focused on posts from people with haemophilia and their caregivers, with particular attention to the 13-25 age groups. RESULTS: Out of 47,239 relevant posts identified, 839 were selected for in-depth qualitative analysis. An artificial intelligence-powered natural language processor, CoLoop, was used to identify five main themes: 'care and management' (83.54% of posts in the 13-25 cohort), 'living with haemophilia' (61.59%), 'social aspects of haemophilia' (31.10%), 'advancements and future outlook' (11.59%), and 'genetic considerations and family planning' (7.93%). Overall, the results demonstrated that young people with haemophilia in the UK seek greater independence, emotional resilience, and tailored support, highlighting the value of patient-centred care, digital engagement, and policy reforms to address both clinical and psychosocial needs. CONCLUSION: This study underscores the importance of supporting healthcare professionals in deepening their understanding of their patients' lived experiences of haemophilia to provide comprehensive care. Social media listening offers a novel, measurable approach for identifying the challenges and unmet needs faced by patients with haemophilia.