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系统性硬化症生活质量问卷(SScQoL):土耳其语翻译及心理测量特性评估。

Systemic Sclerosis Quality of Life Questionnaire (SScQoL): translation into Turkish and assessing its psychometric properties.

机构信息

Department of Physiotherapy and Rehabilitation, Faculty of Health Sciences, Izmir Katip Celebi University, Balatcik, Izmir, Turkey.

Department of Physiotherapy and Rehabilitation, Faculty of Health Sciences, Gazi University, Balatcik, Ankara, Turkey.

出版信息

Clin Rheumatol. 2023 Aug;42(8):2135-2143. doi: 10.1007/s10067-023-06626-4. Epub 2023 May 13.

Abstract

BACKGROUND

Systemic sclerosis (SSc) is a chronic autoimmune disease that affects the connective tissues and leads to physical, emotional, and social challenges for patients. Evaluating health-related quality of life (HRQoL) with a disease-specific tool may be preferable for improving patient care and treatment outcomes. The aim of this study was to translate the Systemic Sclerosis Quality of Life Questionnaire (SScQoL) into Turkish and to investigate its psychometric properties.

METHODS

Eighty-six patients with SSc (mean age 51.8 ± 11.7 years, 80 females) participated in the study. Convergent validity was explored by correlation analyses between Turkish SScQoL and Short-Form 36 (SF-36), European Quality of Life Survey-5 Dimensions (EQ-5D), EQ-5D Visual Analog Scale (EQ-VAS), and Scleroderma Health Assessment Questionnaire (SHAQ). Cronbach's alpha was calculated to test internal consistency. Turkish SScQoL was readministered after 7-14 days to fifty-eight patients for determining test re-test reliability. Intraclass correlation coefficients in 95% confidence interval (ICCs [95%CI]) were calculated to examine the agreement between two assessments. Values greater than 15% and an absolute skewness value < 1 were recognized as the presence of a floor or ceiling effect.

RESULTS

SScQoL correlated significantly with SF-36 subdomains (r = -0.347 to -0.618, p < 0.01), EQ-5D (r = -0.535, p < 0.01), EQ-VAS (r = -0.636, p < 0.01), and SHAQ global score (r = 0.521, p < 0.01). SScQoL demonstrated excellent internal consistency (Cronbach's alpha = 0.917), and good to excellent test-retest reliability (ICC [95%CI] = 0.85 [0.76-0.91]). No floor/ceiling effects were observed.

CONCLUSION

The Turkish version of SScQoL seems to have adequate psychometric properties and can be used to evaluate HRQoL in clinical and research settings. Key points • Turkish version of SScQoL is a valid and reliable tool for measuring health-related quality of life of patients with systemic sclerosis. • SScQoL is the only diseases-specific quality of life measurement for systemic sclerosis available in Turkish. • Patients with limited and diffuse SSc seem to be similar in terms of self-reported health-related quality of life.

摘要

背景

系统性硬化症(SSc)是一种慢性自身免疫性疾病,会影响结缔组织,给患者带来身体、情感和社交方面的挑战。使用特定于疾病的工具评估健康相关生活质量(HRQoL)可能更有利于改善患者护理和治疗效果。本研究旨在将系统性硬化症生活质量问卷(SScQoL)翻译为土耳其语,并研究其心理测量特性。

方法

86 名 SSc 患者(平均年龄 51.8±11.7 岁,80 名女性)参与了这项研究。通过与 Short-Form 36(SF-36)、欧洲生活质量调查-5 维度(EQ-5D)、EQ-5D 视觉模拟量表(EQ-VAS)和硬皮病健康评估问卷(SHAQ)的相关性分析来探讨土耳其 SScQoL 的聚合效度。采用 Cronbach's alpha 分析评估内部一致性。对 58 名患者进行了 7-14 天后的土耳其 SScQoL 重测,以确定重测信度。计算 95%置信区间(ICC [95%CI])内的组内相关系数以评估两次评估之间的一致性。大于 15%的值和绝对值<1 的偏度值被认为是存在地板或天花板效应。

结果

SScQoL 与 SF-36 亚领域(r=-0.347 至-0.618,p<0.01)、EQ-5D(r=-0.535,p<0.01)、EQ-VAS(r=-0.636,p<0.01)和 SHAQ 全球评分(r=0.521,p<0.01)显著相关。SScQoL 具有良好的内部一致性(Cronbach's alpha=0.917),并且具有良好到优秀的重测信度(ICC [95%CI]=0.85 [0.76-0.91])。未观察到地板/天花板效应。

结论

土耳其语版 SScQoL 似乎具有足够的心理测量特性,可用于评估临床和研究环境中系统性硬化症患者的 HRQoL。关键点 • 土耳其语版 SScQoL 是一种评估系统性硬化症患者健康相关生活质量的有效且可靠的工具。• SScQoL 是土耳其唯一可用的系统性硬化症特异性生活质量测量工具。• 局限性和弥漫性 SSc 患者的自我报告健康相关生活质量似乎相似。

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