Towards an expert consensus to delineate a clinical syndrome of chronic breathlessness: Chronic Breathlessness Syndrome

Question: Suffering from breathlessness is debilitating, especially breathlessness that persists despite treatment for a diagnosed condition. Identifying this situation as a clinical syndrome could raise awareness amongst patients, clinicians, service providers, researchers and research funders.
Methods: Using the Delphi method, expert group consultations and one-to-one interviews (N=17) generated questions and statements subsequently circulated in 3 survey rounds (N= 34; N=25; N=31) to an extended international group from various settings (clinical and laboratory; hospital, hospice and community), basic sciences and clinical specialties. The a priori target agreement was 70%.
Findings were discussed at a multi-national workshop.
Results: The agreed term, chronic breathlessness syndrome, was defined as breathlessness that persists despite optimal treatment of the underlying pathophysiology and 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.
Answer: We propose Chronic Breathlessness Syndrome as a framework for further discussion. Recognition could improve clinical care, focus research, empower patients and caregivers and encourage wider uptake of evidence-based interventions is an important first step to address the therapeutic nihilism that has pervaded this neglected symptom.