ArticleBMJ open respiratory research2025
Living with pulmonary fibrosis: how affected people experience disease-related information, health services and self-management strategies.
Article in BMJ open respiratory research, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
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
1 citing paper in PubMed.
- Design of a randomized controlled trial comparing hybrid care with standard care for people with pulmonary fibrosis.Respiratory research · 2026Article
Corrections and comments
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Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionPeople with pulmonary fibrosis (PF) experience gaps in care, educational resources and self-management strategies throughout their journey. We sought to identify gaps in care and information, determine essential information, examine sources of information and assess preferred modes of delivery for patient education and self-management (PESM) resources and interventions.
methodsIn this qualitative study, we conducted interviews with people with PF using predefined, literature-based categories ("staying well with PF", "keeping fit & strong with PF", "using oxygen therapy", symptom management "breathlessness", "cough", "fatigue", "anxiety, depression and panic") and categories derived from own experience ("sources of information", "preferred modes of education delivery"). Interviews were analysed using deductive-inductive content analysis.
resultsWe interviewed 11 individuals with PF (one woman), median age of 73 years (range 52-80) and time since diagnosis ranging from 1 to 10 years. Interviews lasted 40-70 min. A priori-defined saturation was reached for each predefined topic. Patients with PF relied on healthcare professionals (HCPs) as their primary information source. However, for sensitive topics such as life expectancy, death or when time with HCPs was limited, they often turned to internet searches with little success. There was a need for guidance on managing antifibrotic side effects, including adaptation of nutrition. While exercise was valued, it lacked structure, particularly at home. Self-management strategies for cough and fatigue remained insufficient. Digital resources were considered beneficial but maintaining in-person interactions with HCPs is essential.
conclusionThis in-depth analysis highlights how people with PF comprehend patient education content and which taught or self-acquired self-management techniques they implement in their lives, including beliefs and concerns. These insights are essential for refining current and future PESM programmes and support the creation of blended learning and digital resources, with HCPs offering guidance on their use, to further support people with PF in self-management.
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Registered trials
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