Understanding People's Experiences of Exacerbations

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.

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. 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 to an 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.