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Publications

Journal Article Epublish

PubMed: 42445234 DOI: 10.1183/23120541.01206-2025

Visibility of breathlessness in fibrotic interstitial lung disease: perceptions of international healthcare professionals.

ERJ Open Res 12(4)

Authors: Meena Kalluri, Nanna Makholm, Thomas Skovhus Prior, Elisabeth Bendstrup, Huzaifa Adamali, Shaney Barratt, Natasha Lovell, Anne-Marie Russell, Charlotte Pooler

Affiliations

  • Division of Pulmonary Medicine, College of Health Sciences, University of Alberta, Edmonton, AB, Canada.
  • Alberta Health Services, Edmonton, AB, Canada.
  • These authors contributed equally.
  • Centre for Rare Lung Diseases, Department of Respiratory Diseases and Allergy, Aarhus University Hospital, Aarhus, Denmark.
  • Centre for Rare Lung Diseases, Department of Respiratory Diseases and Allergy, Aarhus University Hospital, Aarhus, Denmark. Department of Respiratory Diseases, Aalborg University Hospital, Aalborg, Denmark. Department of Clinical Medicine, Aalborg University, Aalborg, Denmark.
  • Department of Respiratory Diseases and Allergy, Aarhus University Hospital, Aarhus, Denmark.
  • Department of Clinical Medicine, Aarhus University, Aarhus, Denmark.
  • Bristol Interstitial Lung Disease, North Bristol NHS Trust, Southmead Hospital, Bristol, UK.
  • Translational Health Sciences, University of Bristol, Bristol, UK.
  • Palliative Medicine, North Bristol NHS Trust, Southmead Hospital, Bristol, UK.
  • College of Medicine and Health, School of Health Sciences, Medical School, University of Birmingham, Birmingham, UK.
  • Palliative and End of Life Care, Specialty Programs, Assisted Living Alberta, Edmonton, AB, Canada.
  • Faculty of Nursing, College of Health Sciences, University of Alberta, Edmonton, AB, Canada.

Abstract

BACKGROUND

Breathlessness is prevalent in fibrotic-interstitial lung diseases (F-ILD) but remains underrecognised and undertreated. The purpose of this study was to examine perceptions of visibility of breathlessness among 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 were central and continuous throughout the three themes of the study: invisibility and visibility of breathlessness; complexity of breathlessness assessment; and becoming aware and prioritising breathlessness. Patients normalise and adapt to minimise their breathlessness. Exertional breathlessness and hypoxaemia 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 recognise or prioritise breathlessness as a symptom. Some sought specific training, most gained competency and awareness through role modelling 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.

MeSH

Lung, Perception, Lung Diseases, Dyspnea, Education, Lung Diseases, Interstitial