Why do people with lung disease suffer every day from chronic breathlessness?

The Better-B survey on chronic breathlessness aims to answer this important question in order to improve patient care. But more palliative care physicians are urgently needed to complete the survey. Currently, only 30 per cent palliative care specialists have responded vs. 70 per cent respiratory specialists. Małgorzata Krajnik (Poland), Claudia Bausewein (Germany), David C Currow (Australia) and Irene J Higginson (UK) invite all physicians working in palliative care or respiratory medicine to participate in the Better-B survey.

Top row, clockwise: Irene Higginson, Claudia Bausewein, Małgorzata Krajnik and David Currow.

When a person has to live day after day with disabling breathlessness and underlying cause(s) are maximally treated, that person faces a future termed “chronic breathlessness” – a distinct clinical syndrome.This, together with studies described in this post, has led to the development of the Better-B survey on chronic breathlessness and we would greatly appreciate your input to the survey by 31 July.

Arguably, symptomatic reduction of chronic breathlessness is a human right.2Why? Firstly, because the burden caused by this syndrome is debilitating for patients and distressing for their families. Secondly, due to the huge number of people experiencing breathlessness at rest or on minimal exertion, this is a global health issue. For example, 330 million people are living with chronic obstructive pulmonary disease. Thirdly, because there is growing evidence on the efficacy of individualised breathlessness plans with non-pharmacological and pharmacological treatments. Recently, Australia licensed regular, low dose, sustained release morphine (up to maximum daily dose of only 30 mg per 24 hours) for the symptomatic management of chronic breathlessness.

However, there are barriers to clinicians recognising and responding to people with chronic breathlessness as part of routine practice. A questionnaire survey conducted online among members of the Polish Respiratory Society (physicians working in respiratory medicine) showed people with COPD (Chronic Obstructive Pulmonary Disease) were less likely to be treated with opioids for the reduction of chronic breathlessness when compared to people with lung cancer.3

In this study, 80 per cent of physicians routinely used opioids to ameliorate breathlessness in people with lung cancer dropping to 32 per cent in people with COPD. More problems with using opioids for breathless patients with COPD were identified in older physicians, those who saw fewer people with lung cancer, and in those with poorer knowledge of Polish Respiratory Society guidelines on palliative care in lung disease. Another recent online survey involved both respiratory doctors in Australia and New Zealand and palliative medicine physicians in Australia, New Zealand and the UK.This study indicated significant differences between these two specialties in symptomatic approaches to managing people with chronic breathlessness syndrome in advanced COPD.

Meeting of the group during 16th EAPC World Congress in Berlin.

In response to these two studies, Better-B, an international consortium intending to improve the care of people with breathlessness and funded by the European Union’s Horizon2020, decided to explore the attitudes and practice when managing chronic breathlessness among respiratory and palliative care physicians from different countries. The questionnaire, prepared with help from experts from the European Association for Palliative Care and the European Respiratory Society, is an initial task in the Better-B project

It’s time for action – please complete the Better-B survey

We can no longer accept the presence of chronic breathlessness as an inevitable part of advanced disease. If you are a physician working in palliative care or respiratory medicine, please use the link to the survey at www.betterbreathe.eu  (follow the link to the Better-B newsletter) or the direct link for the survey: https://www.smartsurvey.co.uk/s/F3J2M/

Or you can scan the survey QR code. The survey is based on three brief case vignettes in COPD, lung cancer and interstitial lung disease (ILD).  

Your participation is crucial. We would like to know what you’re thinking when you see someone with chronic breathlessness and how we can improve the care of these patients in close collaboration of respiratory medicine and palliative medicine. Please, join us in this effort and complete the survey by 31 July 2019.

More about the authors
All authors participate in Better-B study, funded by the European Union’s Horizon2020.
Małgorzata Krajnik is Associate Professor in Palliative Medicine, Chair of Palliative Care, Nicolaus Copernicus University in Torun, Collegium Medicum in Bydgoszcz, Poland. She is a lead of WP1 (Better-B) dedicated to the survey among palliative care and respiratory physicians. Contact Małgorzata by email
Claudia Bausewein is Chair for Palliative Medicine at Munich University and Director of the Department of Palliative Medicine at Munich University Hospital. She is a lead of WP7 (Better-B) dedicated to the dissemination of the Better-B results. Contact Claudia by email.
David C Currow is Professor of Palliative Medicine at the University Technology Sydney and an investigator on the Better-B program. He continues to research many aspects of chronic breathlessness. Contact David by email.
Irene J Higginson is Director of the Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King’s College London and Chief Investigator for the BETTER-B study. Contact Irene by email.


1. Johnson MJ, Yorke J, Hansen-Flaschen J, et al. Towards an expert consensus to delineate a clinical syndrome of chronic breathlessness. Eur Respir J. 2017; 49: 1602277.

2. Currow DC, Abernethy AP, Allcroft P, Banzett RB, Bausewein C, Booth S, et al. The need to research refractory breathlessness. Eur Respir J.2016 Jan; 47(1): 342-3. doi: 10.1183/13993003.00653-2015.

3. Brożek B, Damps-Konstańska I, Pierzchała W, Barczyk A, Currow DC, Jassem E, Krajnik M. End-of-life care for patients with advanced lung cancer and chronic obstructive pulmonary disease: survey among Polish pulmonologists. Pol Arch Intern Med. 2019 Apr 30;129 (4):242-252. doi: 10.20452/pamw.4478.

4. Smallwood N, Currow D, Booth S, Spathis A, Irving L, Philip J. Differing Approaches to Managing the Chronic Breathlessness Syndrome in Advanced COPD: A Multi-National Survey of Specialists. COPD. 2018 Jun; 15(3):294-302. doi: 10.1080/15412555.2018.1502264.







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