系统性红斑狼疮患者的社会支持水平及其慢性病管理策略

目的：探讨系统性红斑狼疮(systemic lupus erythematosus，SLE)患者的社会支持水平及其影响因素，制订相应慢性病管理策略。方法：采用社会支持评定量表(Social Support Rating Scale，SSRS)、抑郁症筛查量表(Patient Health Questionnaire，PHQ-9)、广泛性焦虑量表(Generalized Anxiety Disorder，GAD-7)、SF-36健康调查量表、匹兹堡睡眠质量量表、疲劳视觉模拟评分法对SLE患者进行调查，收集人口学和临床资料，以SLE疾病活动性评分(SLE Disease Activity Index，SLEDAI)评估疾病活动度，SLE疾病损伤指数(SLE Damage Index，SDI)评估疾病损伤程度，分析社会支持的影响因素。结果：共纳入246例SLE患者，SSRS总分为40.76±7.93，与国内常模相比差异无统计学意义(P>0.05)。年龄<18岁、无配偶、无职业和存在疾病损伤的SLE患者的社会支持水平较低(P<0.05)。与高社会支持组(以均数为界)相比，低社会支持组患者抑郁、焦虑的程度更高，患者在SF-36中的心理健康领域(活力、社会功能、情感职能及精神健康)和生理职能得分更低(P<0.05)。结论：SLE患者社会支持水平与健康相关生活质量密切相关，受到年龄、婚姻状况、职业情况、疾病损伤程度等因素的影响。在慢性病管理中，应加强对患者及家属的健康教育，帮助患者提高社会支持水平，从而提高其生活质量。

Social support and management strategies for chronic disease in patients with systemic lupus erythematosus

Objective: To investigate the social support level and its influencial factors in patients with systemic lupus erythematosus (SLE), and to develop the management strategies for chronic disease. Methods: Patients with SLE were investigated by Social Support Rating Scale (SSRS), Patient Health Questionnaire (PHQ-9), Generalized Anxiety Disorder (GAD-7), 36-Item Short-Form Health Survey (SF-36) and Visual Analogue Scale (VAS) of fatigue. The demographic and clinical data of SLE patients were recorded. SLE disease activity and damage severity were assessed by SLE Disease Activity Index (SLEDAI) and SLE Damage Index (SDI), respectively. Influencial factors for social support were analyzed. Results: A total of 246 patients were included. Social support scores for these patients were 40.76±7.93 and the scores showed no significant difference with the national norm (P>0.05). Patients who were younger than 18, single, unemployed or damaged by disease showed lower level of social support (P<0.05). Compared with the high social support group, patients in the low social support group experienced more severe depression or anxiety, and scored lower on mental component summary scale (vitality, social functioning, emotional role and mental health perception) and physical role of SF-36 (P<0.05). Conclusion: Social support levels for patients with SLE are closely related to the quality of life, and influenced by age, marital status, professional condition, and disease damage. Health education for patients and their families should be strengthened in chronic disease management to enhance social support and finally, improve their quality of life.