ArticleBMC pulmonary medicine2018
Marked deterioration in the quality of life of patients with idiopathic pulmonary fibrosis during the last two years of life.
Article in BMC pulmonary medicine, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 37 papers, 2 of them syntheses that pooled it.
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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
37 citing papers in PubMed, 2 syntheses or guidelines pooled it, 74 citations in OpenAlex.
- Which factors influence the quality of end-of-life care in interstitial lung disease? A systematic review with narrative synthesis.Palliative medicine · 2022Pooled it
- Health-related quality of life of patients with idiopathic pulmonary fibrosis: a systematic review and meta-analysis.European respiratory review : an official journal of the European Respiratory Society · 2020Pooled it
- Health-related quality of life and symptoms in patients with IPF treated with nintedanib: analyses of patient-reported outcomes from the INPULSIS® trials.Respiratory research · 2020Trial
- The impact of palliative care on quality of life, anxiety, and depression in idiopathic pulmonary fibrosis: a randomized controlled pilot study.Respiratory research · 2020Trial
- Consensus palliative care referral criteria for people with idiopathic pulmonary fibrosis: an international Delphi study.Annals of the American Thoracic Society · 2026Article
- Place of death among adults with interstitial lung disease in the United States, 1999-2023: a national population-based study.Annals of medicine and surgery (2012) · 2026Review
- Trajectories of Health-Related Quality of Life in Patients With Idiopathic Pulmonary Fibrosis.CHEST pulmonary · 2025Article
- A Microemulsion for Oral Delivery of Nintedanib - QbD-Enabled Formulation Development, In-Vitro Characterization & In-Vivo Pharmacokinetic Assessment.The AAPS journal · 2025Article
- Palliative Care for Patients with Severe Chronic Lung Diseases: A Swiss Position Paper.Respiration; international review of thoracic diseases · 2025Review
- Factors affecting quality of life in connective tissue disease-related interstitial lung disease.PloS one · 2025Article
- Evaluating fatigue and excessive daytime sleepiness: a comparative analysis of prevalence and correlating factors in interstitial lung disease patients and healthy controls.Annals of medicine · 2024Article
- Health-related quality of life measured with K-BILD is associated with survival in patients with idiopathic pulmonary fibrosis.BMC pulmonary medicine · 2024Article
- Determinants of cough-related quality of life in interstitial lung diseases.BMC pulmonary medicine · 2024Article
- Clinical and economic burden of acute exacerbations of idiopathic pulmonary fibrosis: a prospective observational study in Spain (OASIS study).BMC pulmonary medicine · 2024Observational
- The Impact of Integrated Palliative Care on Survival in Idiopathic Pulmonary Fibrosis: A Retrospective Multicenter Comparison.The American journal of hospice & palliative care · 2024Article
- Article
- Association of patient-reported outcome measures with lung function and mortality in fibrotic interstitial lung disease: a prospective cohort study.ERJ open research · 2024Article
- Clinical Characteristics of Individuals with Interstitial Lung Diseases and Indication of End-of-Life Care.Journal of clinical medicine · 2023Article
- Study protocol of an international patient-led registry in patients with pulmonary fibrosis using online home monitoring: I-FILE.BMC pulmonary medicine · 2023Article
- A Retrospective, Descriptive Study of Dyspnea Management in a Multidisciplinary Interstitial Lung Disease Clinic.The American journal of hospice & palliative care · 2023Observational
Corrections and comments
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Authors and funding
6 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundIdiopathic pulmonary fibrosis (IPF) is a chronic disease with a high symptom burden and poor survival that influences patients' health-related quality of life (HRQOL). We aimed to evaluate IPF patients' symptoms and HRQOL in a well-documented clinical cohort during their last two years of life.
methodsIn April 2015, we sent the Modified Medical Research Council Dyspnea Scale (MMRC), the modified Edmonton Symptom Assessment Scale (ESAS) and a self-rating HRQOL questionnaire (RAND-36) to 300 IPF patients, of which 247 (82%) responded. Thereafter, follow-up questionnaires were sent every six months for two years.
resultsNinety-two patients died by August 2017. Among these patients, HRQOL was found to be considerably low already two years before death. The most prominent declines in HRQOL occurred in physical function, vitality, emotional role and social functioning (p < 0.001). The proportion of patients with MMRC scores ≥3 increased near death. Breathlessness and fatigue were the most severe symptoms. Symptom severity for the following symptoms increased significantly and reached the highest mean scores during the last six months of life (numeric rating scale/standard deviation): breathlessness (7.1/2.8), tiredness (7.0/2.3), dry mouth (6.0/3.0), cough (5.8/2.9), and pain with movement (5.0/3.5).
conclusionsTo our knowledge this is the first study demonstrating, that IPF patients experience remarkably low HRQOL already two years before death, especially regarding physical role. In addition, they suffer from severe breathlessness and fatigue. Furthermore, physical, social and emotional wellbeing deteriorate, and symptom burden increases near death. Regular symptom and HRQOL measurements are essential to assess palliative care needs in patients with IPF.
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