ArticleERJ open research2017
What patients with pulmonary fibrosis and their partners think: a live, educative survey in the Netherlands and Germany.
Article in ERJ open research, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers, 2 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
18 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- The supportive care needs of people living with pulmonary fibrosis and their caregivers: a systematic review.European respiratory review : an official journal of the European Respiratory Society · 2020Pooled it
- Diagnosis and treatment of lung disease associated with alpha one-antitrypsin deficiency: A position statement from the Thoracic Society of Australia and New Zealand.Respirology (Carlton, Vic.) · 2020Guideline
- A machine learning approach to identify perspectives of people living with pulmonary fibrosis.ERJ open research · 2026Article
- Patient experiences of idiopathic pulmonary fibrosis (IPF) in China: a multicentre qualitative study.BMJ open respiratory research · 2026Article
- Non-pharmacological Management of Fibrosing Interstitial Lung Diseases.Tuberculosis and respiratory diseases · 2026Article
- Patient-centered care in pulmonary fibrosis: access, anticipate, and act.Respiratory research · 2024Review
- A scoping review of the unmet needs of patients diagnosed with idiopathic pulmonary fibrosis (IPF).PloS one · 2024Article
- Variation in information needs of patients with interstitial lung disease and their family caregivers according to long-term oxygen therapy: a descriptive study.BMC pulmonary medicine · 2023Article
- Exploration of the unmet needs of patients diagnosed with idiopathic pulmonary fibrosis: a scoping review protocol.BMJ open · 2023Article
- Improving the wellbeing of caregivers of patients with COPD using a home-based pulmonary rehabilitation programme.ERJ open research · 2022Article
- Advance Care Planning Needs in Idiopathic Pulmonary Fibrosis: A Qualitative Study.The American journal of hospice & palliative care · 2022Article
- Communicating with patients with idiopathic pulmonary fibrosis: can we do it better?ERJ open research · 2022Review
- Educational aspects of rare and orphan lung diseases.Respiratory research · 2021Review
- Impact of Depression on Patients With Idiopathic Pulmonary Fibrosis.Frontiers in medicine · 2020Article
- Gaps in care of patients living with pulmonary fibrosis: a joint patient and expert statement on the results of a Europe-wide survey.ERJ open research · 2019Article
- Needs, Perceptions and Education in Sarcoidosis: A Live Interactive Survey of Patients and Partners.Lung · 2018Article
- Integrating Patient Perspectives into Personalized Medicine in Idiopathic Pulmonary Fibrosis.Frontiers in medicine · 2017Review
- Idiopathic Pulmonary Fibrosis: Best Practice in Monitoring and Managing a Relentless Fibrotic Disease.Respiration; international review of thoracic diseasesReview
Corrections and comments
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Authors and funding
12 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Pulmonary fibrosis greatly impacts patients and their partners. Unmet needs of patients are increasingly acknowledged; the needs of partners often remain unnoticed. Little is known about the best way to educate patients and partners. We investigated pulmonary fibrosis patients' and partners' perspectives and preferences in care, and the differences in these between the Netherlands and Germany. Additionally, we evaluated whether interactive interviewing could be a novel education method in this population. Patients and partners were interviewed during pulmonary fibrosis patient information meetings. In the Netherlands, voting boxes were used and results were projected directly. In Germany, questionnaires were used. In the Netherlands, 278 patients and partners participated; in Germany, 51. Many participants experienced anxiety. Almost all experienced misunderstanding, because people do not know what pulmonary fibrosis is. All expressed a need for information, psychological support and care for partners. Use of the interactive voting system was found to be pleasant (70%) and informative (94%). This study improves the knowledge of care needs of patients with pulmonary fibrosis and their partners. There were no major differences between the Netherlands and Germany. Interactive interviewing could be an attractive method to acquire insights into the needs and preferences of patients and partners, while providing them with information at the same time.
Identifiers
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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.