Better-B: public participation working group
28th June 2023
Researchers based at the Cicely Saunders Institute are investigating how results from the BETTER-B study will be presented and disseminated to patients, their caregivers and the wider public.
BETTER-B stands for Better Treatments for Breathlessness in Palliative and End of Life Care. It has several components. First, the team surveyed doctors about their current practice and how they are using existing guidelines. The survey suggests there are wide variations in how breathlessness is managed. People are receiving different levels of care based on where they are treated and the disease that they have. Some people may be seen by a respiratory specialist, while others may be treated by palliative care specialists. There is also a need for better treatments to manage the condition.
Second, across five countries, the team is testing an antidepressant called mirtazapine to see the effect on a person’s breathlessness and quality of life. Data collection in the trial completed at the end of June 2023. At the end of the study, the team will produce new European guidance for respiratory and palliative care specialists. This will provide expert-led advice to professionals on how to best manage breathlessness.
The team are currently discussing with people with a lived experience of breathlessness (or caring for someone with breathlessness) to find out what formats they should use to make the results most accessible, how the dissemination plan should be implemented, and how to increase its reach, particularly to underserved/underrepresented groups.
Please email contact us if you would like to participate, or if you have questions about the project.