Bridging care gaps in pulmonary fibrosis: enhancing the patient journey
Bibliographic record
Abstract
Background Addressing unmet needs of patients living with pulmonary fibrosis (PF) is vital for improving outcomes. Aims and objectives To raise awareness of the unmet needs of patients living with PF and provide recommendations to enhance the patient journey post diagnosis. Methods This report summarises key insights from a patient advisory board of 11 participants from Australia, Canada, Europe and the US, including patients with PF, caregivers and advocacy representatives from national patient organisations (POs), representing diverse patient and family views. Results Empowering patients through accessible educational materials, immediate referral to POs, pulmonary rehabilitation and access to pharmacological and non-pharmacological treatment – including psychological support, supplemental oxygen and end-of-life planning – is essential. Healthcare professionals (HCPs) must move away from a "watch-and-wait" approach and adopt a standardised, proactive treatment strategy that provides comprehensive treatment information, enabling patients to make informed decisions about their care. Timely intervention is crucial, as lost lung capacity in PF cannot be restored. Improving HCP communication through training focused on empathy, lay language and cultural sensitivity is vital. Collaboration among patients, POs, HCPs, pharmaceutical companies and policymakers is crucial for driving advocacy efforts and advancing institutional change within healthcare systems to recognise and implement integrated care. Conclusions Integrated, patient-directed care and global collaboration at all levels among stakeholders are essential to overcome barriers and improve outcomes for patients with PF.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.024 | 0.059 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.002 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.014 | 0.006 |
| Scholarly communication | 0.015 | 0.020 |
| Open science | 0.003 | 0.032 |
| Research integrity | 0.012 | 0.020 |
| Insufficient payload (model declined to judge) | 0.017 | 0.004 |
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 source (direct Gemma or distilled Codex), 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".