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美国自身免疫性大疱性疾病生活质量(ABQOL)问卷的可靠性。

Reliability of the autoimmune bullous disease quality of life (ABQOL) questionnaire in the USA.

作者信息

Sebaratnam Deshan F, Okawa Joyce, Payne Aimee, Murrell Dédée F, Werth Victoria P

机构信息

Department of Dermatology, University of New South Wales, St George Hospital Campus, Sydney, Australia.

出版信息

Qual Life Res. 2015 Sep;24(9):2257-60. doi: 10.1007/s11136-015-0965-z. Epub 2015 Mar 21.

DOI:10.1007/s11136-015-0965-z
PMID:25795375
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC4767525/
Abstract

PURPOSE

To evaluate the reliability of the autoimmune bullous diseases quality of life (ABQOL) questionnaire in a North American patient cohort.

METHODS

Patients attending the dermatology clinics of the University of Pennsylvania with a histological diagnosis of an autoimmune bullous disease (AIBD) and self-reported proficiency in English were recruited to participate in the study. Patients completed the ABQOL questionnaire at Day 0 and Day 3. Internal consistency was calculated through Cronbach's alpha. Test-retest reliability was determined by the intraclass correlation coefficient.

RESULTS

Of the 45 patients enrolled in the study, 39 patients (87 %) participated to completion. The mean age was 60.7 years with an equal sex distribution observed. Patients had a range of AIBD including pemphigus vulgaris, bullous pemphigoid, pemphigus foliaceus, epidermolysis bullosa acquisita, mucous membrane pemphigoid and linear IgA disease. Cronbach's alpha was calculated to be 0.90. The intraclass correlation coefficient was calculated to be 0.93 (95 % confidence interval 0.88-0.94).

CONCLUSION

The ABQOL was found to be reliable tested by internal consistency and test-retest reliability in an American patient cohort. It represents a promising disease-specific outcome measure for patients with AIBD.

摘要

目的

评估自身免疫性大疱性疾病生活质量(ABQOL)问卷在北美患者队列中的可靠性。

方法

招募宾夕法尼亚大学皮肤科门诊经组织学诊断为自身免疫性大疱性疾病(AIBD)且自我报告英语熟练的患者参与研究。患者在第0天和第3天完成ABQOL问卷。通过Cronbach's α计算内部一致性。通过组内相关系数确定重测信度。

结果

在纳入研究的45例患者中,39例(87%)完成了研究。平均年龄为60.7岁,性别分布均衡。患者患有多种AIBD,包括寻常型天疱疮、大疱性类天疱疮、落叶型天疱疮、获得性大疱性表皮松解症、黏膜类天疱疮和线状IgA疾病。计算得出Cronbach's α为0.90。组内相关系数计算得出为0.93(95%置信区间0.88 - 0.94)。

结论

在美国患者队列中,通过内部一致性和重测信度测试发现ABQOL是可靠的。它是一种有前景的针对AIBD患者的疾病特异性结局指标。

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2
Development of a quality-of-life instrument for autoimmune bullous disease: the Autoimmune Bullous Disease Quality of Life questionnaire.一种用于自身免疫性大疱性疾病的生活质量评估工具的研制:自身免疫性大疱性疾病生活质量问卷。
JAMA Dermatol. 2013 Oct;149(10):1186-91. doi: 10.1001/jamadermatol.2013.4972.
3
Measurement of health-related quality of life in dermatological research and practice: outcome of the EADV Taskforce on Quality of Life.在皮肤病学研究和实践中测量健康相关的生活质量:EADV 生活质量工作组的成果。
J Eur Acad Dermatol Venereol. 2013 Oct;27(10):1195-203. doi: 10.1111/jdv.12090. Epub 2013 Jan 9.
4
Quality-of-life measurement in blistering diseases.水疱病的生活质量测量。
Dermatol Clin. 2012 Apr;30(2):301-7, ix. doi: 10.1016/j.det.2011.11.008. Epub 2011 Dec 20.
5
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Clin Dermatol. 2012 Jan-Feb;30(1):103-7. doi: 10.1016/j.clindermatol.2011.03.016.
6
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7
Reliability and convergent validity of two outcome instruments for pemphigus.两种天疱疮结局评估工具的信度和收敛效度
J Invest Dermatol. 2009 Oct;129(10):2404-10. doi: 10.1038/jid.2009.72. Epub 2009 Apr 9.
8
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10
Ultrastructural immunocytochemistry of autoimmune bullous diseases.
Australas J Dermatol. 2002 May;43(2):113-9. doi: 10.1046/j.1440-0960.2002.00571.x.