ArticlePloS one2024
A scoping review of the unmet needs of patients diagnosed with idiopathic pulmonary fibrosis (IPF).
Article in PloS one, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers.
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Who cites it
17 citing papers in PubMed.
- Article
- "Good health" and care needs in idiopathic pulmonary fibrosis/progressive pulmonary fibrosis: the COCOS-IPF patient-led European focus groups.ERJ open research · 2026Article
- 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
- The impact of physical activity on people with idiopathic pulmonary fibrosis and the associated experience - a mixed methods structured review.Irish journal of medical science · 2026Review
- Interstitial lung disease fatigue and breathlessness (ILD-FAB) programme: a multidisciplinary feasibility study.BMJ open respiratory research · 2026Article
- Patient-reported experience measure (PREM) for patients with interstitial lung disease (ILD): modification of a pre-existing measure.BMJ open respiratory research · 2026Article
- Beyond attenuation: a translational review of curative-intent pharmacological targets in idiopathic pulmonary fibrosis.Frontiers in medicine · 2026Review
- Breaking the invisible cage: social isolation and coping strategies among patients with idiopathic pulmonary fibrosis.BMC pulmonary medicine · 2025Article
- Can the Development of Orphan Drugs Include Wider Patient Engagement? A Citizens' Jury to Explore a Promissory Notion.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Patient education and self-management in interstitial lung disease: why and what, now how?ERJ open research · 2025Article
- Interstitial Lung Diseases and Lung Cancer: A Review on Similarities, Common Pathogenesis and Therapeutic Approach.Journal of personalized medicine · 2025Review
- ERS Congress 2024: highlights from the Interstitial Lung Diseases Assembly.ERJ open research · 2025Article
- Article
- Identifying outcome domains to establish a core outcome set for progressive pulmonary fibrosis: a scoping review.European respiratory review : an official journal of the European Respiratory Society · 2025Article
- Patient-centered care in pulmonary fibrosis: access, anticipate, and act.Respiratory research · 2024Review
- Research priorities for progressive pulmonary fibrosis in the UK.BMJ open respiratory research · 2024Article
- Addressing unmet needs in rare diseases: A patient-centred vision through INFORM-RD.Therapeutic advances in rare diseaseArticle
Corrections and comments
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
aimsPatients diagnosed with idiopathic pulmonary fibrosis (IPF) have a high symptom burden and numerous needs that remain largely unaddressed despite advances in available treatment options. There is a need to comprehensively identify patients' needs and create opportunities to address them. This scoping review aimed to synthesise the available evidence and identify gaps in the literature regarding the unmet needs of patients diagnosed with IPF.
methodsThe protocol for the review was registered with Open Science Framework (DOI 10.17605/OSF.IO/SY4KM). A systematic search was performed in March 2022, in CINAHL, MEDLINE, Embase, PsychInfo, Web of Science Core Collection and ASSIA Applied Social Science Index. A comprehensive review of grey literature was also completed. Inclusion criteria included patients diagnosed with IPF and date range 2011-2022. A range of review types were included. Data was extracted using a data extraction form. Data was analysed using descriptive and thematic analysis. A total of 884 citations were reviewed. Ethical approval was not required.
results52 citations were selected for final inclusion. Five themes were identified: 1.) psychological impact of an IPF diagnosis. 2.) adequate information and education: at the right time and in the right way. 3.) high symptom burden support needs. 4.) referral to palliative care and advance care planning (ACP). 5.) health service provision-a systems approach.
conclusionThis review highlights the myriad of needs patients with IPF have and highlights the urgent need for a systems approach to care, underpinned by an appropriately resourced multi-disciplinary team. The range of needs experienced by patients with IPF are broad and varied and require a holistic approach to care including targeted research, coupled with the continuing development of patient-focused services and establishment of clinical care programmes.
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