We successfully completed the BETTER-B programme including a Europe-wide survey on physicians’ attitudes and experiences of managing breathlessness, an international randomised controlled trial on the clinical and cost-effectiveness of mirtazapine (a re-purposed medicine) for chronic breathlessness, development of the evidence-based European guidance, now being presented as a Practice Review in Palliative Medicine, as well as qualitative interviews to understand patients and caregivers’ experiences of the trial medication.
Our survey in WP1 revealed substantial variation in the approach to clinical management of chronic refractory breathlessness between specialties, and between lung diseases. Knowledge of clinical practice guidelines appeared to influence evidence-based treatment choices, but there was also evidence of deviation from current recommendations. People were receiving different levels of care based on where they were treated and the disease that they had. Some people may be seen by a respiratory specialist, while others may be treated by palliative care specialists. A substantial proportion of palliative care and respiratory medicine physicians were also using benzodiazepines for breathlessness despite the evidence that benzodiazepines failed to provide evidence of benefit and were associated with harm. Many respondents were unaware of relevant guidelines. Our results were shared at conferences and published open access online in BMC Pulmonary Medicine in Jan 2022. The WP1 survey pointed to the need to consider other treatment options for breathlessness, while also developing cross-specialty guidelines that are user-friendly and well-publicised that could potentially improve practice.
We responded to this need in the BETTER-B randomised, placebo-controlled trial of mirtazapine. We recruited a total of 300 participants (225 patients and 75 caregivers) in Europe, Australia and New Zealand. The trial was conducted in the eye of the storm of the COVID-19 pandemic. The pandemic and lockdowns posed unprecedented challenges to healthcare systems across Europe and in our participating countries, reshaping the landscape of patient care and clinical research. We now have the largest trial of mirtazapine for breathlessness in our patient population. We have also developed an evidence-based European guidance, now being presented as a Practice Review in Palliative Medicine to share best practice around the use of pharmacological treatment options for severe chronic breathlessness in adults with advanced life-limiting diseases.
U-MUEN with support from KCL, partners and the Ethics Advisory Board (EAB) have built an engaged network of patient, public and professional members. We have been guided by the EAB and our Patient and Public Involvement and Engagement (PPIE) members regarding how and in what form we share information on the project website. We developed and translated factsheets for patients, and their families, to explain what happens once a person goes into hospital with COVID-19, co-produced with our partners, the European Lung Foundation. We also developed a guide to support people who suffer from breathlessness. Through Twitter, the guide reached over 70,000 people from across the world.
