A world-first international consensus has agreed the term ‘Chronic Breathlessness Syndrome’. Miriam J Johnson and David C Currow explain
Chronic breathlessness is common in people with advanced disease and can last for many years. Severe breathlessness is one of the most frightening experiences, often accompanied by fear of imminent death. Breathlessness often worsens as death approaches despite optimal treatment of their underlying condition(s), and affects every aspect of life. It is associated with prolonged and repeated health service use but yet remains largely invisible and poorly managed.
Despite evidence-based treatments, we often accept that breathlessness is simply part of our patients’ lives. Many of us practising today were not trained when evidence-based interventions existed and so often avoid asking about symptoms about which we think we can do nothing. By contrast, when we ask about chronic breathlessness, we also give patients permission to talk about their chronic breathlessness.
We asked a group of breathlessness experts from around the world whether breathlessness persisting despite treatment of causative conditions should be delineated as a syndrome. A syndrome (literally “a running together,” from syn- “with” and dromos “a running, course”) is a constellation of clinical findings caused by an underlying disease(s). The clinical findings may constitute a range of symptoms and physical findings, or describe one symptom in a particular context(s).
The result is a new, world-first international consensus naming the syndrome of chronic breathlessness. Identifying this should raise awareness amongst patients, clinicians, service providers, researchers and research funders.
The agreed term, chronic breathlessness syndrome, is defined as breathlessness that persists despite optimal treatment of the underlying disease(s) causes disability. A stated duration of ‘chronic’ is not needed.
Recognition is an important first step to address the therapeutic nihilism that has pervaded this neglected symptom and could empower patients and caregivers, improve clinical care, focus research, and encourage wider uptake of available and emerging evidence-based interventions.
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 [https://doi.org/10.1183/13993003.02277-2016].
More about the authors . . .
Miriam J Johnson is Professor of Palliative Medicine, Director of the Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK.
David C Currow is Professor of Palliative Medicine, Faculty of Health, University of Technology Sydney, Ultimo New South Wales, Australia, and Associate Director of the Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK.