关键词: 白塞病, 生活质量, 混合研究, 护理

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