ArticleOrphanet journal of rare diseases2023
Exploring disease perception in Behçet's syndrome: combining a quantitative and a qualitative study based on a narrative medicine approach.
Article in Orphanet journal of rare diseases, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers, 1 of them a synthesis that pooled it.
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Who cites it
9 citing papers in PubMed, 1 synthesis or guideline pooled it, 10 citations in OpenAlex.
- Artificial intelligence and patient reported outcomes in ophthalmology.Journal of patient-reported outcomes · 2026Pooled it
- Unraveling the psychological burden of Behçet disease: the impact of anxiety and depression on health-related quality of life outcomes.Orphanet journal of rare diseases · 2026Article
- A Comprehensive Patient-Centric Analysis of Disease Burden, Treatment Challenges, and Unmet Needs in Behçet's Disease: Insights from a Large Cohort Study.Medicina (Kaunas, Lithuania) · 2026Article
- Cluster and correspondence analyses for oral ulcer activity related factors in Behçet's syndrome.Medicina oral, patologia oral y cirugia bucal · 2025Article
- Article
- Characterizing the patient experience of physical restraint in psychiatric settings via a linguistic, sentiment, and metaphor analysis.Scientific reports · 2025Article
- A 20-year real-world study on drug survival and predictive factors for infliximab discontinuation in Behçet's syndrome.Frontiers in immunology · 2025Article
- A possible role of lncRNA MEG3 and lncRNA MAFG-AS1 on miRNA 147-b in the pathogenesis of Behcet's disease.Immunogenetics · 2024Article
- Investigation of clinical medicine undergraduates' recognition of narrative medicine.BMC medical education · 2024Article
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Authors and funding
13 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundBehçet Syndrome (BS) has a significant psychological and social impact on patients, caregivers and families. The present study aims at exploring disease perception in BS patients, using both a co-designed survey and the narrative medicine (NM) approach.
methodsAn ad-hoc questionnaire was co-designed by clinicians expert in BS, BS patients and caregivers and BS adult patients were invited to answer the online questionnaires. Cluster analysis was used to analyse data from the survey and to identify groups of patients with diverse disease perception. To further explore real-life perspectives, the stories of illness of a smaller group of adult BS patients were anonymously collected online and analysed by means of text, sentiment and qualitative analysis.
resultsTwo hundred and seven patients answered the survey and forty-three stories were collected. The cluster analysis highlighted that accepting or not the disease has a strong impact on the daily life, on how BS patients perceive themselves and in terms of hope for the future. The stories revealed that patients often address common issues, such as the long and complex journey faced from the disease onset until the BS diagnosis, which was strongly connected to the concept of time and perceived as an exhausting period of their lives.
conclusionTo our knowledge, this is the first study that addressed disease perception also applying the NM principles in BS. The current perception that BS patients have of their disease should encourage the BS scientific and patient community in joining forces in order to improve the journey of BS patients.
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