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本文引用的文献

1
Development and initial validation of a self-assessed lupus organ damage instrument.狼疮器官损伤自评工具的制定和初步验证。
Arthritis Care Res (Hoboken). 2010 Apr;62(4):559-68. doi: 10.1002/acr.20193.
2
Work disability in systemic lupus erythematosus is prevalent and associated with socio-demographic and disease related factors.系统性红斑狼疮患者的工作残疾较为普遍,与社会人口学和疾病相关因素有关。
Lupus. 2009 Dec;18(14):1281-8. doi: 10.1177/0961203309345784. Epub 2009 Oct 23.
3
Validation of the Spanish, Portuguese and French versions of the Lupus Damage Index questionnaire: data from North and South America, Spain and Portugal.验证西班牙语、葡萄牙语和法语版狼疮损伤指数问卷:来自南北美洲、西班牙和葡萄牙的数据。
Lupus. 2009 Oct;18(12):1033-52. doi: 10.1177/0961203309105590.
4
The 1000 Canadian faces of lupus: determinants of disease outcome in a large multiethnic cohort.狼疮在加拿大的千面人生:一个大型多民族队列中疾病转归的决定因素
J Rheumatol. 2009 Jun;36(6):1200-8. doi: 10.3899/jrheum.080912. Epub 2009 Apr 15.
5
Damage and mortality in a group of British patients with systemic lupus erythematosus followed up for over 10 years.一组随访超过10年的英国系统性红斑狼疮患者的损伤情况及死亡率
Rheumatology (Oxford). 2009 Jun;48(6):673-5. doi: 10.1093/rheumatology/kep062. Epub 2009 Apr 9.
6
Fibromyalgia, systemic lupus erythematosus (SLE), and evaluation of SLE activity.纤维肌痛、系统性红斑狼疮(SLE)及SLE活动度评估
J Rheumatol. 2009 Jan;36(1):82-8. doi: 10.3899/jrheum.080212.
7
Effect of disease activity and damage on quality of life in patients with systemic lupus erythematosus: a 2-year prospective study.疾病活动度和损伤对系统性红斑狼疮患者生活质量的影响:一项为期2年的前瞻性研究。
Scand J Rheumatol. 2009 Mar-Apr;38(2):121-7. doi: 10.1080/03009740802415527.
8
Initial and accrued damage as predictors of mortality in Brazilian patients with systemic lupus erythematosus: a cohort study.初始损伤和累积损伤作为巴西系统性红斑狼疮患者死亡率的预测因素:一项队列研究。
Lupus. 2008 Nov;17(11):1042-8. doi: 10.1177/0961203308093829.
9
Validation of the systemic lupus erythematosus activity questionnaire in a large observational cohort.大型观察性队列中系统性红斑狼疮活动问卷的验证
Arthritis Rheum. 2008 Jan 15;59(1):136-43. doi: 10.1002/art.23238.
10
Work dynamics among persons with systemic lupus erythematosus.系统性红斑狼疮患者的工作动态
Arthritis Rheum. 2007 Feb 15;57(1):56-63. doi: 10.1002/art.22481.

狼疮损伤简要指数:系统性红斑狼疮患者报告的损伤衡量指标。

Brief index of lupus damage: a patient-reported measure of damage in systemic lupus erythematosus.

机构信息

Rosalind Russell Medical Research Center for Arthritis, University of California-San Francisco, CA 94143-0920, USA.

出版信息

Arthritis Care Res (Hoboken). 2011 Aug;63(8):1170-7. doi: 10.1002/acr.20503.

DOI:10.1002/acr.20503
PMID:21584946
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC3149719/
Abstract

OBJECTIVE

To develop and test the Brief Index of Lupus Damage (BILD), an interviewer-administered measure of damage in systemic lupus erythematosus (SLE), for use in epidemiologic studies in which administration of the Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index (SDI) by trained physicians is not possible or feasible. In addition, we compared the BILD to another recently developed patient-reported measure, the Lupus Damage Index Questionnaire (LDIQ), which was designed as a written survey.

METHODS

A sample of 81 patients from 2 university-affiliated SLE clinics was used to test the criterion validity of the BILD and the LDIQ. A second sample, the Lupus Outcomes Study (n = 728), was used to ascertain the construct validity of the BILD.

RESULTS

We found good agreement between most BILD items and corresponding SDI items, and moderately high overall Spearman's rank correlations for SDI with BILD (0.64) and with LDIQ (0.54). BILD scores were higher among older individuals, those with longer disease duration, and those with higher mean disease activity in the preceding 4 years. In addition, higher BILD scores were associated with poorer self-rated health and functional status, greater unemployment and work disability, and increased health care utilization.

CONCLUSION

We developed and performed a preliminary validation study demonstrating content, criterion, and construct validity of a new practical patient-reported instrument of SLE disease damage. Although further studies are needed to examine reliability and to document psychometric properties in other populations, the BILD appears to represent a promising tool for studies of SLE outside the clinical setting.

摘要

目的

开发并测试狼疮损伤简要指数(BILD),这是一种针对系统性红斑狼疮(SLE)损伤的访谈式评估工具,可用于那些无法或难以让接受过培训的医生使用系统性红斑狼疮国际合作诊所/美国风湿病学会损伤指数(SDI)进行评估的流行病学研究。此外,我们还将 BILD 与另一种最近开发的患者报告量表——狼疮损伤指数问卷(LDIQ)进行了比较,后者是一种书面调查。

方法

我们使用来自 2 所大学附属医院的 81 名 SLE 患者的样本来检验 BILD 和 LDIQ 的标准效度。第二个样本是狼疮结局研究(n=728),用于确定 BILD 的结构效度。

结果

我们发现 BILD 的大多数项目与相应的 SDI 项目之间存在良好的一致性,并且 SDI 与 BILD(0.64)和与 LDIQ(0.54)之间的总体 Spearman 秩相关系数较高。BILD 评分在年龄较大、疾病持续时间较长、以及在过去 4 年内平均疾病活动度较高的个体中较高。此外,较高的 BILD 评分与较差的自我评估健康状况和功能状态、更高的失业和工作残疾以及更多的医疗保健利用相关。

结论

我们开发并进行了一项初步验证研究,证明了一种新的实用患者报告 SLE 疾病损伤工具的内容、标准和结构效度。尽管需要进一步研究来检验可靠性并在其他人群中记录心理测量特性,但 BILD 似乎是在临床环境之外研究 SLE 的一种很有前途的工具。