ReviewEuropean respiratory review : an official journal of the European Respiratory Society2021
Patient-reported outcomes and patient-reported outcome measures in interstitial lung disease: where to go from here?
Review in European respiratory review : an official journal of the European Respiratory Society, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 29 papers, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
29 citing papers in PubMed, 1 synthesis or guideline pooled it, 36 citations in OpenAlex.
- 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
- 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
- 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
- Expanding Remote Patient Monitoring for Pre-Lung Transplant Candidates With Interstitial Lung Disease.Clinical transplantation · 2026Article
- Quality of Life in Sarcoidosis.Diagnostics (Basel, Switzerland) · 2026Review
- Application of the Idiopathic Pulmonary Fibrosis Patient-Reported Outcome Measure (IPF-PROM) scale to a Greek IPF patient population and its interrelation with depressive symptoms and health-related quality of life.BMJ open respiratory research · 2026Observational
- Beyond scarring: a next-generation vision for pulmonary fibrosis management.Molecular biology reports · 2026Review
- A syndromic framework for progressive pulmonary fibrosis.Respiratory research · 2026Review
- Impact of Medical Comorbidities on Respiratory-Related Patient-Reported Outcome Measures in Fibrotic Interstitial Lung Disease.Journal of clinical medicine · 2026Article
- Ethical integration of patient-reported outcomes and digital biomarkers in AI healthcare models: an expert consensus framework.Frontiers in digital health · 2026Article
- Association of Mood or Affect With Respiratory-Related Quality of Life, Lung Function, and All-Cause Mortality in Fibrotic Interstitial Lung Disease.Mayo Clinic proceedings. Innovations, quality & outcomes · 2025Article
- Association of Health-Related Quality of Life with Functional and Radiological Outcomes in Patients with Rheumatoid Arthritis-Associated Interstitial Lung Disease, Systemic Sclerosis-Associated Interstitial Lung Disease, and Idiopathic Pulmonary Fibrosis.Archives of rheumatology · 2025Article
- Making Sense of Dyspnea in Interstitial Lung Disease.Annals of the American Thoracic Society · 2025Article
- A Consistent Lack of Consistency: Definitions, Evidentiary Expectations and Potential Use of Meaningful Change Data in Clinical Outcome Assessments Across Stakeholders. Results from a DIA Working Group Literature Review and Survey.Therapeutic innovation & regulatory science · 2025Review
- Person-centred health outcomes in the routine care for people with progressive pulmonary fibrosis: the COCOS-IPF project's European survey on healthcare professionals' views and practices.Respiratory research · 2025Article
- Patient-reported outcome for physical function in idiopathic inflammatory myopathy.Rheumatology (Oxford, England) · 2025Observational
- Treatable traits in idiopathic pulmonary fibrosis: focus on respiratory tract infections-a systematic review and a meta-analysis.EClinicalMedicine · 2025Article
- Patient-centered care in pulmonary fibrosis: access, anticipate, and act.Respiratory research · 2024Review
- Divergent perspectives: exploring the relationships between St. George's Respiratory Questionnaire and outcome measures in systemic sclerosis-associated interstitial lung disease.Clinical rheumatology · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
20 authors at 14 institutions in 9 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Patient-reported outcome measures (PROMs), tools to assess patient self-report of health status, are now increasingly used in research, care and policymaking. While there are two well-developed disease-specific PROMs for interstitial lung diseases (ILD) and idiopathic pulmonary fibrosis (IPF), many unmet and urgent needs remain. In December 2019, 64 international ILD experts convened in Erice, Italy to deliberate on many topics, including PROMs in ILD. This review summarises the history of PROMs in ILD, shortcomings of the existing tools, challenges of development, validation and implementation of their use in clinical trials, and the discussion held during the meeting. Development of disease-specific PROMs for ILD including IPF with robust methodology and validation in concordance with guidance from regulatory authorities have increased user confidence in PROMs. Minimal clinically important difference for bidirectional changes may need to be developed. Cross-cultural validation and linguistic adaptations are necessary in addition to robust psychometric properties for effective PROM use in multinational clinical trials. PROM burden of use should be reduced through appropriate use of digital technologies and computerised adaptive testing. Active patient engagement in all stages from development, testing, choosing and implementation of PROMs can help improve probability of success and further growth.
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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.