Exploring the Patient Experience in Behçet’s Syndrome: A Two-Phase Qualitative Study Using a Biographical-Narrative Approach

Abstract

Background Behçet’s syndrome (BS) is a systemic autoimmune disease, classified among the vasculitides, with an unknown etiology. It significantly impacts the quality of life of those affected. Healthcare professionals must understand the characteristics of this syndrome to provide comprehensive care. Objectives The main objective of this study is to synthesize qualitative evidence on BS, and explore the life experiences of a person living with this condition, through a biographical-narrative account to inform clinical and psychosocial care strategies. Methods A two-phase study was conducted. Phase 1 involved a qualitative systematic review, including studies in English and Spanish, without restrictions on publication year. A search was conducted in the Medline, Web of Science, and Scopus databases. Themes and sub-themes were extracted to develop the interview guide. In Phase 2, a semi-structured interview was conducted with a woman diagnosed with BS, employing a biographical-narrative design. The interview was recorded, transcribed, and coded, and themes and sub-themes were identified using ATLAS.ti software (version 25.0.1; ATLAS.ti Scientific Software Development GmbH, Berlin, Germany). Results The themes (n = 3) and sub-themes (n = 7) identified in the interview were: coping and adaptation strategies (self-care and seeking support), interactions with the healthcare system (medical care and health education), and the experience of living with the disease (emotional well-being, physical discomfort, and vulnerability). Conclusions Qualitative literature on BS is limited and focused on adults, revealing gaps in care and psychosocial support. The testimonial collected highlights the everyday barriers faced by individuals with BS, and identifies key areas for clinical and psychosocial intervention. Further multidisciplinary qualitative research is recommended to improve diagnosis, treatment, and comprehensive support.