Visibility of breathlessness in F-ILD: Perceptions of international healthcare professionals

Background: Breathlessness is prevalent in fibrotic-interstitial lung diseases (F-ILD) but remains underrecognized and undertreated. The purpose of this study was to examine perceptions of visibility of breathlessness amongst healthcare professionals experienced with managing patients with F-ILD.

Methods: Four focus groups and three key-informant zoom interviews were held with 28 multinational participants from diverse practice settings and health disciplines. Using a qualitative inductive approach, themes were developed and confirmed through open coding and ongoing content analysis.

Results: The inevitability and invisibility of breathlessness in F-ILD was central and continuous throughout the three themes of the study: invisibility and visibility of breathlessness; complexity of breathlessness assessment; and becoming aware and prioritizing breathlessness. Patients normalize and adapt to minimize their breathlessness. Exertional breathlessness and hypoxemia are less understood by clinicians, friends, and family, contributing to its invisibility. Symptom assessment and management are complex and limited, reliance may be through an objective lens. There is a need for an easy-to integrate tool to assess and manage breathlessness. All participants were unprepared by their initial education to recognize or prioritize breathlessness as a symptom. Some sought specific training, most gained competency and awareness through role modeling and mentorship from experts. These healthcare professionals did not accept breathlessness as inevitable in F-ILD and urged others to not ignore it.

Conclusions: Our study suggests perceptions of the invisibility and inevitability of breathlessness in F-ILD can change. Management of breathless patients can improve through awareness, education, and training.