Exploring Patient Experiences of Using Long-term Prophylaxis for the Management of Hereditary Angioedema

Hereditary Angioedema (HAE) is a rare inherited disorder causing recurrent, painful swelling in various body parts. These episodes can disrupt daily life- affecting work, education, mental health, and quality of life. Effective disease management, including prophylactic treatment, is essential. However, patient experiences beyond clinical outcomes are underexplored . Clinical trials (e.g., lanadelumab and C1-INH) report improved quality of life and general health. Yet, how patients experience these treatments in day-to-day life is less understood. UK study: Found treatment barriers and psychological challenges. US study: Reported reduced anxiety and improved functioning with C1-INH. These findings show the importance of combining clinical data with patient perspectives. This qualitative study explores how patients experience long-term prophylaxis, focusing on perceived benefits, fears, practicality and challenges.