Division of Rheumatology, Department of Internal Medicine, Istanbul University-Cerrahpasa, Istanbul, Turkey.
Division of Rheumatology and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania, Philadelphia, USA.
Clin Exp Rheumatol. 2019 Nov-Dec;37 Suppl 121(6):28-34. Epub 2019 Apr 12.
Behçet's syndrome (BS) is a multisystem variable-vessel vasculitis with significant life impact. The aim of this study was to explore the perspectives of patients with BS with different types of organ involvement.
Semi-structured qualitative interviews were conducted with 20 patients with BS with different types of organ involvement. Interviews were audio-recorded, transcribed, and translated into English. A Grounded Theory approach was employed in thematic analysis of translated interviews.
Interviews with participants yielded four themes, including symptoms (skin problems, pain, vision problems, fatigue/sleep disturbances, and gastrointestinal/weight loss), impact on function (impact on speech and vision, mobility, energy for tasks, adaptations, and self-care), psychological impact (emotions and emotional management techniques), and social impact (ability to socialize generally and impact on familial relationships).
Patients with BS identified several domains, including physical functioning, psychological state, and social identity that are significantly modulated by the symptoms of BS. Those are inter-related with physical symptoms, reflecting the multi-system character of BS, and impair patients' function impacting on psychological and social identities. This work advances an understanding of BS, and will be useful in developing patient-oriented outcome measures for use in studying BS.
白塞病（BS）是一种多系统、可变血管炎，对生活有重大影响。本研究旨在探讨不同器官受累类型的 BS 患者的观点。
对 20 例不同器官受累类型的 BS 患者进行半结构式定性访谈。访谈进行录音、转录，并翻译成英文。采用扎根理论方法对翻译后的访谈进行主题分析。
对参与者的访谈产生了四个主题，包括症状（皮肤问题、疼痛、视力问题、疲劳/睡眠障碍以及胃肠道/体重减轻）、对功能的影响（对言语和视力、活动能力、任务能量、适应和自我护理的影响）、心理影响（情绪和情绪管理技巧）和社会影响（一般社交能力和对家庭关系的影响）。
BS 患者确定了几个领域，包括身体功能、心理状态和社会认同，这些领域受到 BS 症状的显著调节。这些领域与身体症状相互关联，反映了 BS 的多系统特征，并损害了患者的功能，影响了他们的心理和社会认同。这项工作增进了对白塞病的理解，并将有助于开发以患者为导向的结局测量指标，用于研究白塞病。
