Understanding people’s experiences of exacerbations (The Exaqual study)

Title: Understanding people’s experiences of exacerbations (The Exaqual Study)

Funder: AstraZeneca

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:

The experience of COPD - artwork by Anna Bean
"Me in a dark cloud"
"I think I would draw an elastic band around me"
"I have flames shooting out of my head"
"My hair standing on end"
"I'm getting ripped to smithereens inside"

After being diagnosed with COPD most patients said they hadn’t expected that their symptoms would get much worse, and felt unprepared about what to do when this did happen, as they hadn’t been told about this by their clinicians. Now having lived with COPD for a few years and having experienced times when their symptoms got much worse they had many suggestions about what people should be told about this when they are first diagnosed.

The response they received from clinicians the first time patients experienced their symptoms getting much worse had a long-lasting impact on them and shaped how they responded when their symptoms got worse subsequently. Day-to-day living with COPD, including their coping and help-seeking behaviour, the environment they lived in and the responsiveness of their clinicians to their symptoms (the Breathing Space they achieved) also shaped how these patients responded to their symptoms getting worse. Patients’ responses included taking inhaled medication, using breathing exercises, resting, using a fan or opening a window to get fresh air, taking prescribed antibiotics and/or steroids, calling their GP or 111 for advice and calling 999 for an ambulance.

The pandemic and the restrictions imposed on people in England affected patients’ behaviour and their experience of having COPD considerably. Some were well-supported and able to manage when their symptoms got worse, living relatively comfortably through the pandemic. Whereas others had many times when their symptoms got worse and little support, leading over-reliance on prescribed medication, emergency call-outs and other difficulties.

The full findings of this research will be submitted for publication in the near future.

The study is a collaboration between Hull York Medical School’s Clinical Sciences Centre, the Wolfson Palliative Care Research Centre, and Asthma + Lung UK.

Hull Health Trials Unit are responsible for study management and data management systems.

ExacQual Study privacy notice