Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Via Roma 67, 56126, Pisa, Italy.
Institute of Management, Scuola Superiore Sant'Anna, Pisa, Italy.
Orphanet J Rare Dis. 2023 Mar 18;18(1):58. doi: 10.1186/s13023-023-02668-8.
Behçet 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.
An 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.
Two 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.
To 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.
贝切特综合征（BS）对患者、照顾者和家属都有重大的心理和社会影响。本研究旨在通过合作设计的调查和叙事医学（NM）方法来探索 BS 患者的疾病认知。
由 BS 临床专家、BS 患者和照顾者共同设计了一份专门的问卷，并邀请 BS 成年患者在线回答问卷。聚类分析用于分析调查数据，并确定具有不同疾病认知的患者群体。为了进一步探索现实生活中的观点，我们在线匿名收集了一小部分成年 BS 患者的疾病故事，并通过文本、情感和定性分析进行分析。
207 名患者回答了问卷，我们收集了 43 个故事。聚类分析表明，接受或不接受疾病对日常生活、BS 患者对自身的认知以及对未来的希望都有很大的影响。这些故事揭示了患者经常面临的一些常见问题，例如从疾病发作到 BS 诊断所经历的漫长而复杂的旅程，这与时间的概念密切相关，被视为他们生活中疲惫的一段时期。
据我们所知，这是第一项在 BS 中应用 NM 原则来探讨疾病认知的研究。目前，BS 患者对自身疾病的认知应鼓励 BS 科学界和患者群体共同努力，以改善 BS 患者的就医体验。
