Inevitability and invisibility of breathlessness:Perceptions and barriers to management in Interstitial Lung Disease
Bibliographic record
Abstract
Background: Breathlessness is a key symptom in patients with interstitial lung diseases (ILD). It is not consistently prioritized in care by health care professionals (HCP) for various reasons, and it is underreported when patients do not initiate discussions with their clinicians. This leads to neglect and poor care.<br/><br/>Objective: The purpose of this study was to explore the visibility of and challenges in breathlessness care as perceived by HCPs experienced in managing ILD patients.<br/><br/>Methods: A qualitative inductive approach was used, with open coding and ongoing content analysis. Four focus groups and 3 key-informant interviews were held in Canada, United States, Denmark, and the United Kingdom.<br/><br/>Findings: There were 28 generalists and specialists from diverse disciplines and settings. The inevitability and invisibility of breathlessness in ILD was a central and continuous theme throughout the findings. Two major themes were related to the aim of the study: invisibility and visibility of breathlessness and complexity of breathlessness assessment. The third theme, becoming aware of and prioritizing breathlessness, arose from descriptions of education and learning about breathlessness in practice.<br/><br/>Conclusion: Breathlessness may remain invisible and dismissed by HCPs, family, and others, including patients who minimize their own symptoms, decrease their activities and lose quality of life. Breathlessness assessment is complex and must be prioritized in education and practice. It is not inevitable although it may be underestimated, hidden, ignored, or normalized. To alleviate distress and manage progression, patients need to be explicitly asked to describe their breathlessness, including with daily activities and crises events.
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How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.001 | 0.000 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.000 | 0.001 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.001 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.000 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one teacher head, not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".