New international breathlessness research programme launches

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 an incapacitating and frightening symptom that currently affects approximately 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 current guidelines. Second, across five countries, it trials a new medicine for people who are severely affected by breathlessness and chronic respiratory diseases such as COPD and ILD. Third, it launches a new website with the most up-to-date 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.     

Margaret Ogden, a Cicely Saunders Institute patient representative who suffers from breathlessness had this to say:

“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.

The BETTER-B programme builds on an already impressive international body of studies from the consortium partners to tackle the ongoing problems associated with breathlessness. These include various studies into the effects of breathlessness on people’s lives, the different types of breathlessness experienced and research into more effective treatment regimes.

A randomised controlled trial found benefits when a new integrated Breathlessness Support Service was presented. Several 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.

The Leeds Institute of Clinical Trails (LICTR) has this to say on their excellent news

"The BETTER-B project is an excellent opportunity to bring together knowledge and expertise surrounding the debilitating symptom of breathlessness from across the EU and further afield (Australia). The project aims to identify better treatments for breathlessness for patients within palliative care.

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 inexpensive antidepressant. It is already also used to successfully 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 suffering with breathlessness, especially on their symptoms, on those close to them and on the costs of necessary 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 their website.

For further information please contact:

Anna Johnston

Research Project and Coordination Assistant

0207 848 5357

BETTER-B is funded by the European Union’s Horizon 2020 research and innovation programme under grant agreement No.  825319.