Abstract:

Objective To investigate the status of quality of life（QoL） and its influencing factors in patients with Behçet’s disease（BD），in order to inform the development of nursing interventions. Methods We employed a parallel mixed-methods design. From April to May，2024，257 BD patients were recruited via convenience sampling from the WeChat groups of the Behçet Alliance. Quantitative data were collected using the General Information Questionnaire，the Behçet’s Disease Quality of Life Scale（BD-QoL），the Behçet’s Disease Current Activity Form（BDCAF），the Generalized Anxiety Disorder 7-item scale（GAD-7），the Patient Health Questionnaire 9-item （PHQ-9），and the Chinese version of the Pittsburgh Sleep Quality Index（CPSQI）. Influencing factors were identified using univariate analysis and multiple linear regression. For the qualitative component，a phenomenological approach was adopted，and semi-structured interviews were conducted with 20 BD patients. Interview data were analyzed using Colaizzi’s 7-step method. Results In the quantitative study，255 valid questionnaires were returned，yielding a valid response rate of 99.2%. The mean total BD-QoL score was（14.10 ± 8.31）. Multiple linear regression identified rural residence，prominent ocular symptoms，and high levels of anxiety and depression as independent factors affecting QoL（P<0.05）. Qualitative analysis yielded 3 themes：physical limitation and physiological pain；anxiety，depression，and negative self-perception；and social avoidance and impaired Role performance. Integration of the quantitative and qualitative findings revealed that ocular symptoms impair QoL through both physical and psychological pathways；anxiety，depression，and negative self-perception form a vicious cycle；inadequate medical and social support in rural areas exacerbates the decline in QoL. Conclusion The QoL of BD patients is influenced by multiple physical，psychological，and social factors. Clinical nursing should implement multidimensional management focused on ocular symptoms，integrate routine GAD-7 and PHQ-9 screening with psychological interventions，and enhance the accessibility of medical resources and social support in rural areas to improve patients’ QoL.

Key words: Beh?et’s Disease, Quality of Life, Mixed-Methods Study, Nursing Care

摘要：

目的 调查白塞病患者生活质量现状及影响因素，为临床护理干预策略的制订提供依据。 方法 采用平行式混合研究设计，2024年4—5月便利选取白塞联盟患友微信群中的257例白塞病患者作为研究对象。量性研究采用一般资料调查表、白塞病生命质量量表、白塞病近期活动评分量表、广泛性焦虑障碍量表、患者健康问卷抑郁量表、匹兹堡睡眠质量指数进行调查，采用多元线性回归分析生活质量的影响因素。质性研究采用现象学研究，对20例白塞病患者进行半结构式访谈，运用Colaizzi 7步分析法对访谈资料进行整理分析。 结果 量性研究结果：回收有效问卷255份，白塞病生命质量量表总分为（14.10±8.31）分；多元线性回归分析显示，居住在农村、眼部症状突出、焦虑程度高、抑郁程度高是白塞病患者生活质量的影响因素（P<0.05）。质性研究提炼3个主题：躯体受限与生理痛苦、焦虑抑郁与自我否定、社交回避与社会角色受阻。混合研究验证：眼部症状通过生理与心理路径双重影响生活质量、焦虑抑郁与自我否定形成恶性循环、农村地区医疗及社会支持不足加剧生活质量下降。 结论 白塞病患者生活质量受生理、心理、社会多种因素影响，临床护理需加强以眼部症状为核心的多维管理，常规开展焦虑抑郁筛查及心理干预，同时完善农村地区医疗资源与社会支持，以改善白塞病患者的生活质量。

关键词: 白塞病, 生活质量, 混合研究, 护理