系统性硬化症患者可接受的外观变化负担症状状态:一项横断面调查

Q2 Medicine

The Journal of rheumatology. Supplement Pub Date : 2022-06-01 DOI:10.3899/jrheum.210889

M. Le Ralle, C. Daste, F. Rannou, L. Kwakkenbos, M. Carrier, M. Lefèvre-Colau, A. Roren, B. Thombs, L. Mouthon, C. Nguyen

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引用次数: 0

摘要

目的:系统性硬化症(SSc)患者经常报告外观变化带来的沉重负担。我们的目的是评估SSc患者外观变化带来的负担的患者可接受症状状态(PASS)。方法:我们对SCISCIF II研究进行了二次分析，这是一项来自法国的113例SSc患者的横断面调查，纳入硬皮病患者为中心的干预网络队列。采用自我管理的数字评分量表(0，无负担至10，最大负担)评估外观变化带来的负担。用一个特定的锚定问题来评估症状状态的可接受性。回答“是”的参与者属于认为自己的症状状态可以接受的患者群体。外观变化负担的PASS用75百分位法估计。结果:在SCISCIF II研究中，82/113(73%)参与者可获得外观变化带来的负担评估和锚定问题的答案。中位年龄为55岁(IQR 24)岁，平均病程9.6年(SD 6.5)年，32/80(40%)的参与者患有弥漫性皮肤SSc。外观变化造成的负担的PASS估计为4.8 (95% CI 1.0-7.0)，满分为10分。结论本研究提供了对外观变化负担的PASS估计。我们的估计可以作为一个二元反应标准来评估针对外观改变负担的治疗效果。

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Patient Acceptable Symptom State for Burden From Appearance Changes in People With Systemic Sclerosis: A Cross-sectional Survey

Objective People with systemic sclerosis (SSc) often report substantial burden from appearance changes. We aimed to estimate the patient acceptable symptom state (PASS) for burden from appearance changes in people with SSc. Methods We conducted a secondary analysis of the SCISCIF II study, a cross-sectional survey of 113 patients with SSc from France enrolled in the Scleroderma Patient-centered Intervention Network Cohort. Burden from appearance changes was assessed with a self-administered numeric rating scale (0, no burden to 10, maximal burden). Acceptability of the symptom state was assessed with a specific anchoring question. Participants who answered yes were in the group of patients who considered their symptom state as acceptable. The PASS for the burden from appearance changes was estimated with the 75th percentile method. Results Assessments of burden from appearance changes and answers to the anchoring question were available in 82/113 (73%) participants from the SCISCIF II study. Median age was 55 (IQR 24) years, mean disease duration 9.6 (SD 6.5) years and 32/80 (40%) participants had diffuse cutaneous SSc. The PASS estimate for the burden from appearance changes was 4.8 (95% CI 1.0-7.0) of 10 points. Conclusion Our study provides a PASS estimate for burden from appearance changes. Our estimate could serve as a binary response criterion to assess the efficacy of treatments targeting burden from appearance changes.

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来源期刊

The Journal of rheumatology. Supplement Medicine-Medicine (all)

自引率

0.00%

发文量

期刊介绍： The Journal of Rheumatology is a monthly international serial edited by Duncan A. Gordon, The Journal features research articles on clinical subjects from scientists working in rheumatology and related fields, as well as proceedings of meetings as supplements to regular issues. Highlights of our 36 years serving Rheumatology include: groundbreaking and provocative editorials such as "Inverting the Pyramid," renowned Pediatric Rheumatology, proceedings of OMERACT and the Canadian Rheumatology Association, Cochrane Musculoskeletal Reviews, and supplements on emerging therapies.