With my illness, breathlessness is the main and most problematic symptom for me. My mother also had suffered from breathlessness – she had terminal cancer. And my 90-year-old uncle now currently suffers from it – he has asbestos on the lungs. It is such a debilitating symptom and has a huge impact on quality of life. Anything to reduce the impact of this symptom would have been a great help to me and my family.
Margaret Ogden, a Cicely Saunders Institute patient representative who suffers from breathlessness
28 March 2019
New international breathlessness research programme launches
The study aims to relieve suffering and improve quality of life for people with severe breathlessness.
A new international study launched in early 2019 is seeking to deliver a step change in the evidence-based treatment of severe breathlessness among people affected by respiratory diseases, especially chronic obstructive pulmonary disease (COPD) and interstitial lung disease (ILD).
Breathlessness is a debilitating and frightening symptom that currently effects an estimated 15 million people in Europe, with this figure set to increase in the future.
This new research programme, called BETTER-B (BETter Treatments for Refractory and chronic Breathlessness) has several components. First, it surveys doctors about their current practice and how they are using existing guidelines. Second, across five countries, it trials a new medicine for people who are severely affected by breathlessness and chronic respiratory diseases. Third, it launches a new website with the latest information on treatments for those affected by breathlessness and for doctors, nurses, physiotherapists and others caring for people affected by these conditions. Fourth, at the end of the programme, it will produce a new European position statement for respiratory and palliative care specialists on breathlessness management.
The BETTER-B programme builds on an impressive international body of work from the consortium partners to tackle the problem of breathlessness. These include studies into the effects of breathlessness on people’s lives, the different types of breathlessness experienced and into better treatments. A randomised controlled trial found benefits when a new integrated Breathlessness Support Service was offered. Comprehensive systematic reviews found benefits of walking aids and other non-pharmacological treatments, and of holistic services. Other reviews did not find benefits for benzodiazepine drugs, even though these are commonly used.
Breathlessness is a persistent yet often ignored symptom, and the BETTER-B team hope the testing of mirtazapine can establish whether or not it will be another treatment option for those with COPD or ILD suffering from its debilitating effects.
Principal Investigator for BETTER-B, Professor Irene Higginson from the Cicely Saunders Institute said:
“The Cicely Saunders Institute and our BETTER-B partners have built a large body of work in breathlessness, testing both medicines and non-pharmacological treatments. As a first step in treating breathlessness it is always important to try to control the underlying disease, and to use the many evidence-based non-pharmacological treatments. However, when these don’t work anymore and breathlessness gets worse, then there are too few options. In BETTER-B we want first to provide better information on what we already know does and doesn’t work, so that everyone can get the best from what we know now. At the same time we will test the new medicine. We have some preliminary evidence that this medicine, which is an antidepressant called mirtazapine, may relieve breathlessness, even when people are not depressed. But now we need evidence from a properly conducted clinical trial.”
With support from Marie Curie in the UK the team have already found that the trial they propose is feasible. Mirtazapine is a widely used antidepressant, which is inexpensive. It is already also used to relieve some types of pain. Some small studies have suggested it may help breathlessness even though the person affected is not depressed. The trial will robustly measure the effects of mirtazapine treatment on the person with breathlessness, especially on their symptoms, on those close to them and on the costs of health and social care.
This programme will add to our growing body of knowledge with the ultimate aim of relieving suffering and improving the quality of life for those with this distressing symptom, and their friends, family and carers.
For further information on the BETTER-B study you can visit the website.
For further information please contact:
Anna Johnston
Research Project and Coordination Assistant
Anna.johnston@kcl.ac.uk
0207 848 5357
BETTER-B is funded by the European Union’s Horizon 2020 research and innovation programme under grant agreement No. 825319.
