ArticleERJ open research2021
The Living with Pulmonary Fibrosis questionnaire in progressive fibrosing interstitial lung disease.
Article in ERJ open research, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 31 papers, 3 of them syntheses that pooled it.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
31 citing papers in PubMed, 3 syntheses or guidelines pooled it, 40 citations in OpenAlex.
- Cough burden in progressive pulmonary fibrosis: a systematic review with narrative synthesis.Health and quality of life outcomes · 2026Pooled it
- Patient-reported outcome measures for cough used in interstitial lung disease: a systematic review.European respiratory review : an official journal of the European Respiratory Society · 2025Pooled it
- The burden of cough in idiopathic pulmonary fibrosis and other interstitial lung diseases: a systematic evidence synthesis.Respiratory research · 2024Pooled it
- Trial
- Effects of nintedanib on symptoms in patients with progressive pulmonary fibrosis.The European respiratory journal · 2024Trial
- Responsiveness and meaningful change thresholds of the Living with Pulmonary Fibrosis (L-PF) questionnaire Dyspnoea and Cough scores in patients with progressive fibrosing interstitial lung diseases.BMJ open respiratory research · 2022Trial
- How and by whom are multiple language-related issues managed in transnational qualitative research using content analysis? A scoping review.International journal of nursing studies advances · 2026Article
- Design of a randomized controlled trial comparing hybrid care with standard care for people with pulmonary fibrosis.Respiratory research · 2026Article
- [Evolving management of SARD-ILD : Current challenges and emerging treatment options for rheumatoid-associated interstitial lung diseases].Zeitschrift fur Rheumatologie · 2026Review
- Assessment of sleep quality and sleep disordered breathing in patients with interstitial lung diseases.Sleep & breathing = Schlaf & Atmung · 2026Article
- Pathogenesis and immune regulation of rheumatoid arthritis-associated interstitial lung disease: from basic research to clinical implications.Frontiers in immunology · 2026Review
- Progressive pulmonary fibrosis: the importance of identification and intervention.European respiratory review : an official journal of the European Respiratory Society · 2026Review
- Design of the MIST study: a double-blind, randomised, placebo-controlled phase 2b trial of pirfenidone solution for inhalation in patients with progressive pulmonary fibrosis.BMJ open respiratory research · 2025Article
- Design of an open-label extension trial of nerandomilast (BI 1015550) in patients with idiopathic pulmonary fibrosis and progressive pulmonary fibrosis (FIBRONEER™-ON).BMC pulmonary medicine · 2025Article
- Article
- Phase 2 study design and analysis approach for BBT-877: an autotaxin inhibitor targeting idiopathic pulmonary fibrosis.BMJ open respiratory research · 2025Article
- Examining Cough's Role and Relief Strategies in Interstitial Lung Disease.Journal of clinical medicine · 2025Review
- Potential of phosphodiesterase 4B inhibitors in the treatment of interstitial lung disease associated with autoimmune diseases.Clinical and experimental rheumatology · 2025Review
- Design of a randomised controlled hybrid trial of nintedanib in patients with progressive myositis-associated interstitial lung disease.BMC pulmonary medicine · 2024Article
- Worsening dyspnoea as a predictor of progression of pulmonary fibrosis.The European respiratory journal · 2024Article
Corrections and comments
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Authors and funding
6 authors at 3 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
The Living with Idiopathic Pulmonary Fibrosis (L-IPF) questionnaire was developed with substantial input from patients with idiopathic pulmonary fibrosis (IPF) to assess symptoms and health-related quality of life (HRQoL). Because IPF is the prototypical chronic fibrosing interstitial lung disease (ILD) with a progressive phenotype, we expanded applicability of the L-IPF by deleting the word "idiopathic", creating the L-PF (Living with Pulmonary Fibrosis) questionnaire, and then assessed its relevance among patients with progressive fibrosing ILDs in one-to-one interviews. Patients in the USA and Germany with any progressive fibrosing ILD other than IPF were asked about their disease and symptoms, completed the 44-item L-PF questionnaire (comprising two modules that assess symptoms and impacts of disease) and then answered a series of debriefing questions. Interviews were recorded, transcribed and coded for qualitative content analysis. 20 patients were interviewed, but time constraints meant not all were asked about all items. The most frequent diagnoses were rheumatoid arthritis-associated ILD (25%) and mixed connective tissue disease-associated ILD (20%). Almost all patients endorsed the symptoms assessed by the L-PF: shortness of breath (19 out of 20 patients), cough (19 out of 20) and fatigue (18 out of 20). Most patients endorsed impacts of progressive fibrosing ILD on activities of daily living, physical well-being, sleep, emotional well-being, and social aspects of their lives. Most patients had an overall positive impression of the Symptoms module and understood items as intended. All seven patients asked understood the items of the Impacts module. The L-PF contains concepts relevant and important to patients with progressive fibrosing ILD, and items are understood as intended.
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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.