Understanding people’s experiences of exacerbations

What is it like when the symptoms of people living with COPD get much worse and what language do they use to describe this? This is what we aimed to understand in our study in which we interviewed 40 people from around England.

Generally clinicians say that someone is having an exacerbation if their symptoms have got much worse, but people in our study found the word exacerbation difficult to say and very few said they used the word, with half saying it meant nothing to them at all!

Instead most people talk about things getting worse e.g. “My breathing’s worse” or “I’m having a bad day”, while others used the term “flare-up”. We recommend clinicians use a phrase such as “When your symptoms get worse…” or use the term “flare-up” when talking with patients and carers, rather than using the word exacerbation.

People in our study told us that the main symptoms they notice getting much worse are breathlessness and fatigue, with many also experiencing a cough and producing coloured phlegm. In addition to these physical symptoms many people described feeling frightened and anxious, especially when their breathlessness gets 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 artwork below was created by Anna Bean and is based on what people told us.

This artwork draws together many different descriptions and the following slides show the descriptions that people gave that are linked with each part of the picture. There are also two animations that you can watch here: Underwater and Volcano.

How do you feel about these pictures and descriptions? What must it be like to feel like this? Have you had experiences like these too? Do leave a comment-we’d be interested to hear from you!

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