Towards an expert consensus to delineate a clinical syndrome of chronic breathlessness

Abstract

Breathlessness that persists despite treatment for the underlying conditions is debilitating. Identifying this discrete entity as a clinical syndrome should raise awareness amongst patients, clinicians, service providers, researchers and research funders.Using the Delphi method, questions and statements were generated expert group consultations and one-to-one interviews (n=17). These were subsequently circulated in three survey rounds (n=34, n=25, n=31) to an extended international group from various settings (clinical and laboratory; hospital, hospice and community) and working within the basic sciences and clinical specialties. The target agreement for each question was 70%. Findings were discussed at a multinational workshop.The agreed term, chronic breathlessness syndrome, was defined as breathlessness that persists despite optimal treatment of the underlying pathophysiology and that results in disability. A stated duration was not needed for "chronic". Key terms for French and German translation were also discussed and the need for further consensus recognised, especially with regard to cultural and linguistic interpretation.We propose criteria for chronic breathlessness syndrome. 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.

Chronic breathlessness associated with poorer physical and mental health-related quality of life (SF-12) across all adult age groups

“…Chronic breathlessness is a distinct clinical syndrome1 most frequently attributed to respiratory disease. Chronic breathlessness has a profound impact on people's day-to-day function, emotional well-being, their families and correlates with poorer prognosis.…”

Chronic breathlessness: symptom or syndrome?

“…In this issue of the European Respiratory Journal, a perspective article by JOHNSON et al [14] calls on us to change our approach to patients with chronic breathlessness. They report in detail the results of a Delphi consultation process conducted to identify whether experts in a range of relevant disciplines felt that there was a need to identify a chronic breathlessness syndrome and if so, how it should be defined.…”

“…For some, the term chronic may be a problem as it seems to exclude consideration of patients who remain breathless despite optimal support in acute settings like mechanical ventilation [15]. JOHNSON et al [14] considered the term persistent breathlessness but opted by a majority vote for chronic breathlessness syndrome. Pesonally, I am not entirely convinced by the arguments that these patients comprise a discrete syndrome.…”

“…JOHNSON et al [14] have done our community a service by highlighting the plight of the large number of patients who remain symptomatic despite our best efforts. Rightly they want to move the idea of palliating symptoms beyond the field of end-of-life care.…”

Contributions of a hand-held fan to self-management of chronic breathlessness

“…It is defined as "an unpleasant sensation of breathlessness caused by an underlying disease or disease, which persists despite optimum treatment directed at the underlying disease" ( [1], p. 204). Chronic breathlessness has been described as a syndrome whereby breathlessness persists despite optimal treatment of the underlying cause and leads to disability [2]. Chronic breathlessness can have a range of interacting causes [3], as well as complex relationships with other symptoms, notably anxiety and fatigue [4].…”