The invisibility of chronic breathlessness. Why don't we talk about the symptom?

Abstract

Purpose of review: Chronic breathlessness is distressing and debilitating, yet often under-recognised. This review summarises recent insights into the visibility of breathlessness and delineates potential contributing factors to its invisibility.

Recent findings: Chronic breathlessness' invisibility is multi-faceted and often leads to avoidance behaviour by patients. The symptom's presence, severity and impacts can be hidden from patients, caregivers, clinicians and the public due to its insidiousness, supposed subjectivity, stigma and the ability to be modulated by reducing exertion. This leads to patients' under-reporting of their breathlessness in clinic and low levels of public unawareness. Other contributing factors can include clinicians' failure to initiate conversations about breathlessness at times because of lack of knowledge about assessment and treatment, or prioritising disease management over symptom management.

Summary: There is robust evidence that chronic breathlessness is often missed, unacknowledged or misunderstood by patients, caregivers, clinicians and society. Optimised clinical recognition and response may help to reverse these trends. Longitudinal studies are needed to explore whether such perceptions can be changed. Intervention studies should address every aspect of invisibility - from clinical improvements to minimising stigma and validating the subjective experience of patients.

Keywords: assessment; chronic breathlessness; communication; stigma; symptom management.