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

Objectives: Hereditary Angioedema (HAE) is a rare genetic disorder that causes swelling in various parts of the body, including the throat and airways, which can be life-threatening. Effective management is essential, and long-term prophylaxis (LTP) is one treatment used to prevent or reduce attacks. This study explores patient experiences of using LTP, addressing the question: How do patients experience using long-term prophylaxis to manage HAE? Design: A qualitative design was used with online semi-structured interviews. Methods: Fourteen adults with HAE using LTP were purposively sampled through the patient support charity HAE UK. Interviews are being analysed using reflexive thematic analysis (RTA). Results: Themes are being developed around the practicality of LTP, associated fears, concerns, perceived benefits, support, and treatment challenges. RTA supports the interpretation of patterned meaning across the dataset. Analysis: The study follows Braun and Clarke's (2022) six-phase RTA process: familiarisation, coding, theme generation, reviewing, defining/refining, renaming, and write-up. Conclusions: The findings will contribute to understanding patient experiences of LTP in HAE management and may help inform improvements in treatment, care, and quality of life.