Abstract
BACKGROUND: Physical activity is now considered generally beneficial for persons with haemophilia (PWH). However, the specific type and extent of activity and its impact on quality of life (QoL) and bleed protection during exercise is under-researched. This knowledge gap should significantly impact PWH's ability to manage their condition optimally. OBJECTIVE: To explore levels of physical activity and understand bleed protection during exercise among PWH as part of the Liberate Life project. METHODS: A web-based survey was conducted across eight European countries between August and September 2023. The online survey was developed by haemophilia treatment experts and patient association representatives according to the Checklist for Reporting Results of Internet E-Surveys (CHERRIES) method. The 24-question survey, distributed to PWH or their parents/caregivers, covered topics such as demographics, the impact of haemophilia on daily life, bleed protection understanding and involvement in physical activities. An activity index was used to categorize PWH as 'more' or 'less' active. RESULTS: Of 374 respondents analysed, PWH engagement in physical activities, mainly low-impact activities like walking, swimming or cycling, was high (90.9%). Most respondents (74.9%) were 'less active' according to the activity index. There was a significant knowledge gap in respondents' understanding of bleed protection provided by factor and non-factor therapies. Joint health (68.7%), disease severity (69.3%) and capability for physical activity (62.3%) were indicated as key variables influencing PWH QoL. CONCLUSION: These findings underscore the need for educational programs to improve PWH's understanding of protective factor levels and the role of non-factor therapies in managing haemophilia.