评估和改善系统性红斑狼疮患儿的健康相关生活质量

Assessment and improvement of health - related quality of life in childhood - onset systemic lupus erythematosus

随着系统性红斑狼疮（ systemic lupus erythematosus, SLE ）生存率的提高，SLE患儿的健康相关生活质量（health—related quality of life，HRQoL）也越来越被人们所重视。针对HRQoL的评估中，对SLE患儿而言，特别重要的方面包括疲劳、疼痛、学习能力、自理能力、社会及家庭生活、获得性依赖等。已有研究表明，健康调查简表（the MOS3 6-item short from health survey，SF-36）是评估SLE患者HRQoL最可靠且通用的工具。通过SF-36的评估，SLE患者的HRQoL明显低于普通人群。为改善和提高SLE患儿的HRQoL，可实施的干预措施包括心理辅导与治疗，如电话随访辅导、SLE自助课程和心理治疗等；也包括生物制剂、霉酚酸酯、低胆固醇饮食等治疗方法，但更多的有效干预手段仍需要进一步研究。

With improvements in mortality in systemic lupus erythematosus（SLE） ,the health- related quality of life（HRQoL） of these patients is increasingly being recognized as an important outcome. Domains of HRQoL of parti- cular importance to SLE patients include fatigue, pain, ability to study,independence, social and family life and learned helplessness. The MOS 36 -item short from health survey（ SF- 36） currently appears to be the best available generic instrument for the assessment of HRQoL in SLE. It has been shown that SLE patients have poorer functional status than the general population. HRQoL in SLE patients has been improved by psycho - educational interventions including telephone counselling, a self- help course, group psychotherapy; therapies including biological agents, mycophenolate mofetil and a cholesterol - lowering diet. Additional research is needed to identify strategies which can improve HRQoL in SLE patients.