Patients need to be asked about their priorities for research into COPD exacerbation if any progress is going to be made, the 2019 British Thoracic Society Winter Conference has heard.
Professor John Hurst, professor of respiratory medicine at University College London, told delegates that in two decades there had not been a single new treatment for COPD exacerbation which was “deeply deeply disappointing” and that diagnosis remained inadequate.
“I can’t really think of any other area of medicine where there has been no change in 20 years. We really have to challenge ourselves to ask why that is and what we can do about it.”
But with pragmatic decisions to make around limited research funding it is vital that studies are directed to the questions that are most important to patients, delegates at the London meeting heard.
And a new UK program set to report in 2020, could do just that, Professor Hurst said.
It is the first time that the approach – a method on collecting patient and clinician views run by the James Lind Alliance – has been used in COPD but successful versions have been done in asthma, mesothelioma and most recently cystic fibrosis.
His team have now gathered more than 1900 questions from 1548 participants, 82% of whom are a patient with COPD or a carer, he said.
They are now trawling through the information to discount the areas where there is already evidence to come up with the top 10 unanswered questions with direct relevance to patients and carers with COPD.
Professor Hurst said despite efforts to capture the diverse range of patients with COPD, the answers were mostly from white respondents, something he is worried about.
“One of the most common questions we had was how do I know when an exacerbation is starting,” he said.
“What we are looking for is anything where there isn’t evidence or there are ongoing uncertainties,” he said.
“There is a great unmet need in COPD exacerbation and if we’re really going to change outcomes we need to stop what we’re doing because it’s really not working and think differently and challenge ourselves how to do better.”