Title: Understanding people’s experiences of exacerbations (The Exaqual Study)
Time frame: 2020-2021
Contact for more details: Dr Michael Crooks (Clinical Sciences Centre) and Dr Ann Hutchinson (Wolfson Palliative Care Research Centre)
About the research
Exacerbations of COPD (when people’s symptoms get much worse than usual) are very distressing for patients and have long-term consequences for their health. Exacerbations also have a great effect on the people caring for these patients.
We interviewed forty patients with COPD and seven carers from a variety of places in England to improve our understanding of how people feel about exacerbations, including their experiences, expectations and understanding of these events and how this may have changed since COVID-19.
Bringing Breathlessness into View: from PhD to new partnerships
In this video Dr Ann Hutchinson describes the pathway from her original research to public engagement work based around the Bringing Breathlessness into View exhibition and then how this work then led on to her being contracted to conduct research for AstraZeneca.
Summary of findings
Patients with COPD often find that their symptoms get much worse than normal. The main symptoms they notice getting worse are breathlessness, fatigue, poor sleep and a cough with sputum.
Very few patients used the word “exacerbation” and this term meant nothing to many of the people interviewed; instead they used phrases to describe their symptoms getting worse like “I’m having a bad day” or “me breathing’s just worse” and some used the phrase “flare-up”.
These findings suggest that clinicians should consider asking about ‘when your symptoms get worse’ or use the term ‘flare-up’ when speaking with patients and their carers about exacerbations.
How does it feel when your COPD symptoms get much worse?
We asked COPD patients to tell us what they would put in a drawing to describe how they feel when their symptoms get much worse.
In the interviews we asked people to tell us to describe to us how it feels when their symptoms worsen and they gave a variety of vivid descriptions. The following artwork and animations, created by artist Anna Bean, is based on what they said: