Rodríguez-Sánchez Ariadna, Rodríguez-Suárez Claudio-Alberto, Díaz-González Candelaria de la Merced, González-de la Torre Héctor
Nursing, Complejo Hospitalario Universitario Insular Materno Infantil, Las Palmas de Gran Canaria, ESP.
Nursing, Universidad de Las Palmas de Gran Canaria, Las Palmas de Gran Canaria, ESP.
Cureus. 2025 Jul 28;17(7):e88891. doi: 10.7759/cureus.88891. eCollection 2025 Jul.
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.
白塞病（BS）是一种全身性自身免疫性疾病，归类于血管炎，病因不明。它对患者的生活质量有重大影响。医疗保健专业人员必须了解该综合征的特征，以便提供全面的护理。目的：本研究的主要目的是综合关于白塞病的定性证据，并通过传记式叙述来探索患有这种疾病的人的生活经历，以为临床和心理社会护理策略提供信息。方法：进行了两阶段研究。第一阶段涉及定性系统评价，包括英文和西班牙文的研究，对出版年份无限制。在Medline、科学引文索引和Scopus数据库中进行了检索。提取主题和子主题以制定访谈指南。在第二阶段，对一名被诊断患有白塞病的女性进行了半结构化访谈，采用传记式叙述设计。访谈进行了录音、转录和编码，并使用ATLAS.ti软件（版本25.0.1；ATLAS.ti科学软件开发有限公司，柏林，德国）确定主题和子主题。结果：访谈中确定的主题（n = 3）和子主题（n = 7）为：应对和适应策略（自我护理和寻求支持）、与医疗保健系统的互动（医疗护理和健康教育）以及患疾病的经历（情绪健康、身体不适和脆弱性）。结论：关于白塞病的定性文献有限且侧重于成年人，揭示了护理和心理社会支持方面的差距。收集的证词突出了白塞病患者面临的日常障碍，并确定了临床和心理社会干预的关键领域。建议进一步开展多学科定性研究，以改善诊断、治疗和全面支持。
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