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

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.

This study sought to understand the perspectives and challenges of young people living with haemophilia in the UK by analysing social media conversations.

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.

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.

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.