Perceptions of Pain in Haemophilia

Pain is something people with haemophilia know only too well. 

Despite recent efforts to prioritise pain management in haemophilia care, little research has emerged that truly gets to grips with the everyday impact of pain on people with haemophilia. 

Perceptions of Pain in Haemophilia was a cross-sectional, survey-based study conducted among people with all severities of haemophilia, funded by Sobi UK Ltd, Roche Products Ltd, and Chugai Pharma UK Ltd. 

Incorporating elements from validated tools (EQ-5D; EQ-VAS) the survey was distributed via participating treatment centres. researched the experience of pain among people with haemophilia right across the UK. 

Almost 600 people completed the survey, two thirds of whom told us they had multiple ‘problem joints’. Even in a well-resourced country like the UK, we found that pain affects people with haemophilia of all ages and severities, with huge impacts on wellbeing, mental health, quality of life and social life.

Findings from the study have been shared widely:

• Presentation at the 2020 World Federation of Hemophilia conference
• Publications in peer-reviewed journals
• A summary infographic
• Blogs and social media