Breathlessness is the feeling of being out of breath as your lungs work harder to draw in more oxygen. Persistent breathlessness is when this persists long-term, despite treatment of the underlying condition. It is a frightening symptom that leads to increased distress for patients, families and carers.
Research has shown it is often neglected or under-treated. Our international partners have worked to improve its visibility by growing the knowledge base for treatments which work to improve breathlessness self-management and quality of life, and those that don’t.
Because of its link between mind and body, persistent breathlessness is best targeted with a range of treatments to suit the individual. These can focus on non-drug treatments like breathlessness toolkits, however sometimes optimising treatment of the underlying disease plus non-drug treatments are not enough, and so drug treatments sometimes become necessary.
International breathlessness experts from respiratory, palliative care and rehabilitative specialisms are joining in 2019 for a European Commission funded trial to test whether an antidepressant can be repurposed to help in managing breathlessness where non-drug treatments cannot be effectively used.
The Better-B main trial is still actively recruiting patients across Europe, and we have officially reached a total of 184 participants and 64 caregivers across all sites!
Below you can see a breakdown of total patient recruitment across each site:
A PPI member with the Cicely Saunders Institute has provided the following poem about the BETTER-B programme:
The Better B study, a favourite of mine
Offers ample chances for PPI reps to shine
Its aim to help breathlessness, no easy feat
For respiratory conditions can be challenging to treat
Recruitment of patients, a crucial component
We came up with suggestions, novel and diverse
But too many in number to add to this verse
We learnt more about repurposing of medication
Which can sometimes cause a news sensation
As we wait for data to arrive for analysing
You never know if results turn out to be surprising
We had the chance to ask some of our participants who had finished the BETTER-B trial for their opinions, and have been provided us with the following quotes:
“It was personally rewarding for me because I felt as though I was contributing”
“Participation has been very helpful – a very positive outcome. Pleased to work with the research fellow. Could have done without so many questions but strongly urge anybody who is invited to take part to do so. Every little gain is an improvement so go for it!”
“I was well monitored by the team by addressing my concerns and problems. I thank (consultant’s name) for giving me an opportunity to take part in this trial. I am sorry I do not know if it helped me or not. I was hoping to gain a little weigh which I feel I did but very little. Thank you for all your attention and help. I keep positive about this illness.”