Hereditary Angioedema patient experiences of medication use and
emergency care
Dublin Core
Title
Hereditary Angioedema patient experiences of medication use and
emergency care
emergency care
Subject
Emergency care
Hereditary Angioedema
Qualitative research
Treatment
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.
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
, 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 17, 2025, https://repository.horizon.ac.id/items/show/9536.
emergency care,” Repository Horizon University Indonesia, accessed July 17, 2025, https://repository.horizon.ac.id/items/show/9536.