Hereditary Angioedema (HAE) causes swellings in almost any part of the body.

New treatments, administered at home can be life changing for patients.

Barriers to treatment administration included guilt regarding NHS resource use.

Negative emergency care experiences can exacerbate daily fear of throat attacks.

HAE patients need psychological support and improved emergency care services.

Hereditary angioedema (HAE) is a rare inherited illness characterised by recurrent swellings. Four percent of HAE attacks are life threatening throat swellings requiring urgent medical intervention. The aim of this study was to gain an in depth understanding of patient experiences of use of treatment and emergency care.

65 participants completed an online survey including open ended questions about their experiences and/or completed an in-depth interview. Interview participants were asked to share and talk about up to five images that they felt best represented their life experiences with HAE. Data were analysed using reflexive thematic analysis.

Treatment experiences highlighted the life changing nature of new treatments and benefits for quality of life, but also illustrated common barriers to treatment administration. Emergency care experiences illustrated how throat attacks and fear of their future occurrence could be traumatic.

Findings indicate that HAE patients need psychological support to process fears and negative experiences. In addition, psychological barriers to treatment administration must be addressed to ensure treatment is used effectively. Education for emergency practitioners is also needed to improve emergency treatment and reduce the psychological burden of delayed emergency care.

Emergency care

Hereditary Angioedema

Qualitative research

Treatment

© 2023 The Authors. Published by Elsevier Ltd.