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目的了解首次诊断系统性红斑狼疮(systemic lupus erythematosus,SLE)患者健康教育的需求。方法采用问卷调查的方式对84例首次诊断为SLE的住院患者进行调查,并对调查结果进行统计分析。结果大多数的患者对获得病因、主要用药指导、饮食指导、治疗方法、如何门诊复查等知识的需求最强烈,而最受欢迎的健康教育知识获得方法是电话随访,其次是发放疾病手册和医护人员健康教育。结论首次诊断系统性红斑狼疮的患者对疾病相关知识的认识总体上相对缺乏。需通过调查进行有计划针对性的健康教育,“按需供给”使患者及家属均能了解并正确面对疾病,提高患者的治疗依从性,减少、避免不良事件的发生。
Objective To understand the need of health education for the first time in patients with systemic lupus erythematosus (SLE). Methods A total of 84 inpatients with first diagnosis of SLE were enrolled in the questionnaire survey, and the results of the survey were statistically analyzed. Results The majority of patients had the strongest demand for knowledge of etiology, primary medication guidance, dietary guidance, treatment, and outpatient visits, and the most popular method of obtaining health education knowledge was telephone follow-up, followed by the issuance of disease manuals and medical care Personnel health education. Conclusions The first diagnosis of systemic lupus erythematosus in patients with disease-related knowledge of the general lack of knowledge. Need to be investigated through targeted health education, “on-demand ” so that patients and their families can understand and correctly face the disease, improve patient compliance with treatment, reduce and avoid adverse events.