A summary of research published in the ERJ Open Research
People living with lung conditions that have progressed to a severe stage often experience constant breathlessness that affects daily life. The support given is often inconsistent and it can be difficult to access. A new study has looked at what people living with long-term conditions feel they need to cope better.
The study looked at the experiences of 25 adults living with advanced lung diseases and long-term breathlessness. People included in the study had a range of conditions such as including chronic obstructive pulmonary disease (COPD), lung cancer, interstitial lung disease (ILD) and bronchiectasis.
Researchers conducted telephone interviews with all the participants between July and November 2020. The interviews were designed to understand more about the lived experience of breathlessness, the impact of breathlessness on daily lives and the factors that participants believed worsened their breathlessness.
Four key themes were found from the interviews. The themes were found to be the same between the different condition areas, highlighting the shared experiences of long-term breathlessness.
Participants discussed being unable to carry out regular activities such as walking, housework and washing and dressing. This led to an increased dependence on others for support.
Participants described how important relationships were impacted by breathlessness. This included at the basic level of being able to speak well, along with impacting social activities that had been previously enjoyed.
Breathlessness was described as being complex and a symptom that does not happen in isolation. Participants described the challenges of living with many conditions that often impact each other including arthritis, pain and obesity. They also identified many other factors, including dampness and mould, hot and cold weather and high pollen levels that could make breathlessness worse.
Participants describe how breathlessness affects the way they think about, react and act on breathlessness. A common theme was a sense of losing control, leading to anxiety. In addition, anxiety about other issues could trigger breathlessness. Fear and embarrassment were also emotions that could result in people not acting to help their breathlessness, which contributed to feeling alone.
The results show how challenging breathlessness can be. The findings were common across all people, regardless of the condition they lived with. This highlights the importance of seeing breathlessness as its own issue and not just a side-effect of illness. The researchers believe this supports the idea of managing breathlessness by focusing on the symptom, rather than having disease-specific treatment plans.
The researchers also call for a holistic approach to breathlessness, where lots of different services work together. Some factors that make breathlessness worse, such as poor housing or air pollution, are outside the control of healthcare alone. This means that services need to work together to tackle these avoidable risks and reduce the pressure on both individuals and the healthcare system.
Find out more about managing breathlessness.
Read the original research paper: “Breathlessness stops me doing everything.” Exploring the impact of chronic breathlessness due to advanced respiratory disease and exacerbating factors: a qualitative study
