New treatments are required for severe breathlessness
Imagine how it would feel to struggle every time you take a breath. This is the lived experience of people with severe, persistent breathlessness. Such breathlessness is often a symptom of people with advanced diseases such as cancer and lung disease.
Breathlessness is very common, and with the average person taking between 15-20 breaths per minute, struggling for each one can be very distressing for the people that experience it, as well as their families, friends and those that support them. It leads to increased emergency department use, and out of hours crises. Unfortunately, despite this, it is often ‘invisible’ to health professionals and therefore under-treated.
Significant research is taking place all over the world to try and find ways to help people who suffer from breathlessness, and their carers. Much of this research is being conducted by the Cicely Saunders Institute, King’s College London along with its international collaborators. The research has tested successful methods that don’t involve taking medication, such as a toolkit of resources (including a hand fan and cold-water spray) and holistic services, which encourage the person to manage the symptom independently.
When these methods are not effective enough to support someone with their breathlessness, medications can sometimes be taken, such as morphine and benzodiazepines. However, these can cause side-effects and have mixed success rates.
In 2015, the Cicely Saunders Institute led a Feasibility study called BETTER-B to see whether an antidepressant, mirtazapine could be used in the treatment of severe breathlessness. We know that the parts of the brain which process fear are particularly active when people become breathless. This could mean that by lowering anxiety levels using an antidepressant, breathlessness might become more manageable, improving quality of life.
Funded by Marie Curie, the BETTER-B Feasibility trial set out to test whether it would be possible to recruit patients with COPD, ILD, cancer or chronic heart failure as well as a high breathlessness score on an internationally recognised breathlessness scale (modified Medical Research Council breathlessness score of 3 or 4). If successfully recruited, patients were randomised to receive either mirtazapine or a placebo. Interviews with some of the participants were also conducted, helping the research team understand the experiences and motivations of those that took part.
In January 2020, the BETTER-B Feasibility main trial paper was published as a Brief Communication in Thorax. The BETTER-B Feasibility team were delighted to report that the trial successfully achieved its primary endpoint of recruiting over 60 (64 in total) patients in 3 sites over 1 year.
The success of the BETTER-B Feasibility in recruiting the required number of patients led to a full, 4-year international study to gain funding from the European Commission’s Horizon2020 Fund in 2019. This study will test the effectiveness of mirtazapine on breathlessness in patients from the UK, Italy, Poland, Ireland and Germany. It will also look at how professionals treat breathlessness around Europe, make policy recommendations, and crucially, engage professionals and the public with breathlessness research past and present to ensure this distressing and debilitating symptom is no longer invisible.
By Anna Johnston, Research Project and Coordination Assistant, Cicely Saunders Institute, King's College London