ArticleERJ open research2019
Gaps in care of patients living with pulmonary fibrosis: a joint patient and expert statement on the results of a Europe-wide survey.
Article in ERJ open research, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 41 papers, 1 of them a synthesis that pooled it.
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Who cites it
41 citing papers in PubMed, 1 synthesis or guideline pooled it, 56 citations in OpenAlex.
- Idiopathic Pulmonary Fibrosis (an Update) and Progressive Pulmonary Fibrosis in Adults: An Official ATS/ERS/JRS/ALAT Clinical Practice Guideline.American journal of respiratory and critical care medicine · 2022Guideline
- Risk Model for Predicting Survival Outcomes Using Functional Exercise and Patient-Reported Outcomes in Fibrotic Interstitial Lung Disease: A Prospective Observational Study.Respirology (Carlton, Vic.) · 2025Trial
- Objective Effects and Patient Preferences for Ambulatory Oxygen in Fibrotic Interstitial Lung Disease With Isolated Exertional Hypoxaemia: A Placebo-Controlled 6-Minute Walk Test Study.Respirology (Carlton, Vic.) · 2025Trial
- Clinical Utility of an FDA-Authorized Artificial Intelligence Imaging Platform in Interstitial Lung Disease Diagnosis.Diagnostics (Basel, Switzerland) · 2026Article
- "Good health" and care needs in idiopathic pulmonary fibrosis/progressive pulmonary fibrosis: the COCOS-IPF patient-led European focus groups.ERJ open research · 2026Article
- Patient experiences of idiopathic pulmonary fibrosis (IPF) in China: a multicentre qualitative study.BMJ open respiratory research · 2026Article
- Home-based rehabilitation in interstitial lung disease: picturing the present and drawing the future through a systematic review of the literature.ERJ open research · 2026Review
- Association of prior interstitial lung disease awareness with knowledge, attitudes, and practices in Saudi Arabia: a national cross-sectional study.Frontiers in public health · 2026Observational
- Living with pulmonary fibrosis: how affected people experience disease-related information, health services and self-management strategies.BMJ open respiratory research · 2025Article
- Specific content for education and self-management programmes for people with pulmonary fibrosis: a co-creation, multiphase, mixed-method study.ERJ open research · 2025Article
- Caring for Rural Patients With Interstitial Lung Disease: Perspectives of Pulmonary Fibrosis Foundation Care Center Network Nurses and Providers.CHEST pulmonary · 2025Article
- Comorbidities' Effect on IPF: Pathogenesis and Management.Biomedicines · 2025Review
- Progression of interstitial lung disease after the Envisia Genomic Classifier.ERJ open research · 2025Article
- Widening Patient Engagement for Rare Disease Drug Trials: The Perspectives of Patients With Idiopathic Pulmonary Fibrosis on Participating in Clinical Drug Trials and Drug Trial Design.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- The interstitial lung disease patient pathway: from referral to diagnosis.ERJ open research · 2025Article
- Idiopathic pulmonary fibrosis in the UK: findings from the British Thoracic Society UK Idiopathic Pulmonary Fibrosis Registry.BMJ open respiratory research · 2025Observational
- The role of digital health in respiratory diseases management: a narrative review of recent literature.Frontiers in medicine · 2025Review
- Patient-centered care in pulmonary fibrosis: access, anticipate, and act.Respiratory research · 2024Review
- Research priorities for progressive pulmonary fibrosis in the UK.BMJ open respiratory research · 2024Article
- Mortality trends in idiopathic pulmonary fibrosis in Europe between 2013 and 2018.The European respiratory journal · 2024Article
Corrections and comments
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Authors and funding
19 authors at 12 institutions in 8 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionPulmonary fibrosis (PF) and its most common form, idiopathic pulmonary fibrosis (IPF), are chronic, progressive diseases resulting in increasing loss of lung function and impaired quality of life and survival. The aim of this joint expert and patient statement was to highlight the most pressing common unmet needs of patients with PF/IPF, putting forward recommendations to improve the quality of life and health outcomes throughout the patient journey.
methodsTwo online surveys for patients and healthcare professionals (HCPs) were conducted by the European Idiopathic Pulmonary Fibrosis and Related Disorders Federation (EU-IPFF) in 14 European countries.
resultsThe surveys were answered by 286 patients and 69 HCPs, including physicians and nurses. Delays in diagnosis and timely access to interstitial lung disease specialists and pharmacological treatment have been identified as important gaps in care. Additionally, patients and HCPs reported that a greater focus on symptom-centred management, adequate information, trial information and increasing awareness of PF/IPF is required.
conclusionsThe surveys offer important insights into the current unmet needs of PF/IPF patients. Interventions at different points of the care pathway are needed to improve patient experience.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.