Hereditary Angioedema patient experiences of medication use and
emergency care

Dublin Core

Title

Hereditary Angioedema patient experiences of medication use and
emergency care

Subject

Emergency care
Hereditary Angioedema
Qualitative research
Treatment

Description

Background: 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.
Methods: 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.
Results: 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.
Discussion: 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.

Creator

Amy Elizabeth Burton a,*
, Isobel Lindsay-Wiles a
, Daniel Herron a
, Alison Owen a
, Jade Elliott a
,
Angela Metcalfe b
, Lavanya Diwakar c

Source

https://pdf.sciencedirectassets.com/276922/1-s2.0-S1755599X23X00068/1-s2.0-S1755599X23000782/main.pdf?X-Amz-Security-Token=IQoJb3JpZ2luX2VjEJr%2F%2F%2F%2F%2F%2F%2F%2F%2F%2FwEaCXVzLWVhc3QtMSJGMEQCIFY%2BDBN1fP%2F5yRWMenwjq1kWNtX8ac1%2BV3m8xLyaUluaAiBUOun9wHCJpw6CM9Odz1choXGWlkiTH2Gj%2BeizAgnFXyq8BQiC%2F%2F%2F%2F%2F%2F%2F%2F%2F%2F8BEAUaDDA1OTAwMzU0Njg2NSIMOH8sDYDfH9LGRLp4KpAFF1emE3Fq6Gy0tv0t1FvscDEwoZ%2FJgESQekhwR88V%2Ba%2B7T7%2BipN%2FFNJHCtm1UFID89EKWZ6nIF5K8huOdDLziWBM6xT%2FqPK21r9uQOqKs6Z6q3HQChVtlrhFeGNb0YQxu3yCiHFWvnjJhdpIGooZX5yK1I0luc%2BKNP2FopcLMGhNdVIvwelH2ewvSv04HSYZUtl9m4CBJkUqecErXNSOzBb8c6wIh0H7D%2FPCNbYDm4D%2Bk3HAD4bMebtTRBuKPU0oTOVSs%2BS%2Bs2agJ4yCedjfu8Dma5mUWCZqzCKw8Bp20LSu07t9V5JoEqWHpw2gmsmMZcnotcme23eXbONFBW%2BZrE969xkZl3FiUXB4DYIzg%2Fomztua8eoTnawsg3KBbNLW7WsHmYU0u%2B7gpR98YR2hJffVk5sk%2Fu6ifcm3QmQSNwh%2Bebrx67KR%2B1I5eitW4wBNDJtM6u5XB1If9%2BuVwxBZNoPaxe6VNbRas2ujZs7Hkp47CQXiQUEFdqUEtifof3RAVF%2FI5vre0pY9lj4%2B89CkgSMx5fqm%2BurSU1nWLcS%2BBLOPBMiZ89Y5yp17mmF26wcXSvror8oBQil56eqyy2o1UCg7tNt39wiN5zLGQIhCYe6noGY9HsUYgpWnYoI9B0ZwIrpv5%2BPh9%2Bf%2BLSoHH7qwsE1Oh7AqAn1EIhx4T0zpdRTInnIIX%2BqcQTDLFhwh9ZzO0YqgWSNnCynb5TGxD9OjApreRFlNJB%2FXjF3LdNMZWMv3ELoN21RSQ%2B42gm8isW5zbvzZTqVCkdAmR7fPhwhkSEwR%2BDB70UooLdvOrW6c7niZy2Ij01nbd4R7cvcgWTU0wuoJbNkl7Oq7at1hXprmehlufpO68%2FTSMSGwUl4Jc4gww%2F6TIwgY6sgHT%2BOXRb9YQG2hvkIBIiQrILFkW8emOgNevPqrMfVsLMY%2F4JrrzRgXkJuKNER5PirzgfnqL5yY3GllNBzsnw%2B26xskXJff%2FhLM%2FmhyKvZAh%2F%2BjRldW%2BzDZveruRm5sGIS3tfwiu1hyv3h6ELmnzvJTOoY3roHgpk0VBgXmQRki02lDF1u0xKZVRcL6mPlwBt09hxxb1fYdU6qvBIC%2BRtmGT8JsWPUWdqSApq86RaAzUMuKz&X-Amz-Algorithm=AWS4-HMAC-SHA256&X-Amz-Date=20250618T022912Z&X-Amz-SignedHeaders=host&X-Amz-Expires=300&X-Amz-Credential=ASIAQ3PHCVTYY6F5ONEK%2F20250618%2Fus-east-1%2Fs3%2Faws4_request&X-Amz-Signature=03803ee02ae4ddedcc7980193c3db753dda5063e1a371f60e68dfa26b0d15971&hash=2de321f40ba628795da91ae2ade2c9cda6272b0eddab10c7180d4f4e842e9e10&host=68042c943591013ac2b2430a89b270f6af2c76d8dfd086a07176afe7c76c2c61&pii=S1755599X23000782&tid=spdf-b91551e1-a0e5-4992-8664-0d9670d6d452&sid=14b8a1eb7498d34787591540b87a02ee8336gxrqb&type=client&tsoh=d3d3LnNjaWVuY2VkaXJlY3QuY29t&rh=d3d3LnNjaWVuY2VkaXJlY3QuY29t&ua=13025d53555752065b5050&rr=95175b903f8c0557&cc=id

Publisher

a Centre for Psychological Research, Staffordshire University, United Kingdom b HAE, UK c University Hospitals of North Midlands NHS Trust, United Kingdom

Date

8 agustus 2023

Contributor

Fajar bagus W

Format

PDF

Language

English

Type

Text

Citation

Amy Elizabeth Burton a,* , Isobel Lindsay-Wiles a , Daniel Herron a , Alison Owen a , Jade Elliott a , Angela Metcalfe b , Lavanya Diwakar c , “Hereditary Angioedema patient experiences of medication use and
emergency care,” Repository Horizon University Indonesia, accessed July 11, 2025, https://repository.horizon.ac.id/items/show/9536.