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Patients' experiences with Behçet's syndrome: structured interviews among patients with different types of organ
Yesim Ozguler1, Peter A Merkel2, Mert Gurcan1
1Division of Rheumatology, Department of Internal Medicine, Istanbul University-Cerrahpasa, Istanbul, Turkey.
Objectives:
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.
Methods:
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.
Results:
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).
Conclusions:
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.