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Abstract：
OBJECTIVE: To determine how well skin symptoms considered specific to SSc are captured by patient reported outcomes currently used for assessing patients with SSc, the SHAQ, or skin disease, the Skindex-29; and how well these symptoms correlate with the extent of skin disease on physical exam and skin pathology.
METHODS: SSc patients completed the scleroderma modification of the Health Assessment Questionnaire (SHAQ), Skindex-29 and a Skin Symptom Assessment questionnaire developed for this study. Correlations were assessed between the Skin Symptom Assessment and SHAQ, Skindex-29, modified Rodnan skin score, and skin pathological features including myofibroblast staining completed on the same date.
RESULTS: Tight, hard and rigid/stiff skin symptoms correlated moderately highly with the modified Rodnan skin score (r = 0.445, P = 0.0008; r = 0.486, P = 0.0002; and r = 0.488, P = 0.0002, respectively). Tight skin symptoms correlated moderately with myofibroblast infiltration (r = 0.544, P = 0.0023) and hyalinized collagen (r = 0.442, P = 0.0164), while both hard and rigid/stiff skin correlated moderately with inflammation (r = 0.401, P = 0.0310 and r = 0.513, P = 0.0045), myofibroblast infiltration(r = 0.480, P = 0.0084 and r = 0.527, P = 0.0033) and hyalinized collagen (r = 0.453, P = 0.0137 and r = 0.478, P = 0.0087), while the SHAQ was not found to correlate with any of these pathological changes. In contrast, painful skin symptoms correlated moderately with the SHAQ (r = 0.413, P = 0.0073), and with the three domains of Skindex-29: Symptoms, Emotions and Functioning. Skindex-29 indicates that dcSSc patient skin symptoms are nearly as severe as those of patients with psoriasis or atopic dermatitis.
CONCLUSIONS: Patient reported skin symptoms correlate with clinical and pathological measures in the skin. A validated patient reported skin symptom instrument might considerably improve evaluation of SSc skin disease.
METHODS: SSc patients completed the scleroderma modification of the Health Assessment Questionnaire (SHAQ), Skindex-29 and a Skin Symptom Assessment questionnaire developed for this study. Correlations were assessed between the Skin Symptom Assessment and SHAQ, Skindex-29, modified Rodnan skin score, and skin pathological features including myofibroblast staining completed on the same date.
RESULTS: Tight, hard and rigid/stiff skin symptoms correlated moderately highly with the modified Rodnan skin score (r = 0.445, P = 0.0008; r = 0.486, P = 0.0002; and r = 0.488, P = 0.0002, respectively). Tight skin symptoms correlated moderately with myofibroblast infiltration (r = 0.544, P = 0.0023) and hyalinized collagen (r = 0.442, P = 0.0164), while both hard and rigid/stiff skin correlated moderately with inflammation (r = 0.401, P = 0.0310 and r = 0.513, P = 0.0045), myofibroblast infiltration(r = 0.480, P = 0.0084 and r = 0.527, P = 0.0033) and hyalinized collagen (r = 0.453, P = 0.0137 and r = 0.478, P = 0.0087), while the SHAQ was not found to correlate with any of these pathological changes. In contrast, painful skin symptoms correlated moderately with the SHAQ (r = 0.413, P = 0.0073), and with the three domains of Skindex-29: Symptoms, Emotions and Functioning. Skindex-29 indicates that dcSSc patient skin symptoms are nearly as severe as those of patients with psoriasis or atopic dermatitis.
CONCLUSIONS: Patient reported skin symptoms correlate with clinical and pathological measures in the skin. A validated patient reported skin symptom instrument might considerably improve evaluation of SSc skin disease.
摘要：
目的：为了确定目前用于评估SSc患者的患者报告结局对SSc特异性皮肤症状的捕获程度，SHAQ,或皮肤病，Skindex-29;以及这些症状与体格检查和皮肤病理学上的皮肤病程度的相关性。
方法：SSc患者完成了健康评估问卷（SHAQ）的硬皮病修改，Skindex-29和为这项研究开发的皮肤症状评估问卷。评估了皮肤症状评估和SHAQ之间的相关性，Skindex-29，改良的Rodnan皮肤评分，和皮肤病理特征，包括在同一天完成的肌成纤维细胞染色。
结果：紧，坚硬和僵硬/僵硬的皮肤症状与改良的Rodnan皮肤评分中度高度相关(r=0.445,P=0.0008;r=0.486,P=0.0002;r=0.488,P=0.0002)。皮肤紧绷症状与肌成纤维细胞浸润(r=0.544,P=0.0023)、胶原透明化(r=0.442,P=0.0164)呈中度相关,而坚硬和僵硬/僵硬的皮肤与炎症中度相关（r=0.401，P=0.0310和r=0.513，P=0.0045），肌成纤维细胞浸润（r=0.480，P=0.0084和r=0.527，P=0.0033）和透明胶原（r=0.453，P=0.0137和r=0.478，P=0.0087），而未发现SHAQ与任何这些病理变化相关。相比之下,疼痛的皮肤症状与SHAQ中度相关（r=0.413，P=0.0073），Skindex-29的三个领域：症状，情绪和功能。Skindex-29表明dcSSc患者的皮肤症状几乎与牛皮癣或特应性皮炎患者的皮肤症状一样严重。
结论：患者报告的皮肤症状与皮肤的临床和病理指标相关。经过验证的患者报告的皮肤症状仪器可能会大大提高对SSc皮肤病的评估。
方法：SSc患者完成了健康评估问卷（SHAQ）的硬皮病修改，Skindex-29和为这项研究开发的皮肤症状评估问卷。评估了皮肤症状评估和SHAQ之间的相关性，Skindex-29，改良的Rodnan皮肤评分，和皮肤病理特征，包括在同一天完成的肌成纤维细胞染色。
结果：紧，坚硬和僵硬/僵硬的皮肤症状与改良的Rodnan皮肤评分中度高度相关(r=0.445,P=0.0008;r=0.486,P=0.0002;r=0.488,P=0.0002)。皮肤紧绷症状与肌成纤维细胞浸润(r=0.544,P=0.0023)、胶原透明化(r=0.442,P=0.0164)呈中度相关,而坚硬和僵硬/僵硬的皮肤与炎症中度相关（r=0.401，P=0.0310和r=0.513，P=0.0045），肌成纤维细胞浸润（r=0.480，P=0.0084和r=0.527，P=0.0033）和透明胶原（r=0.453，P=0.0137和r=0.478，P=0.0087），而未发现SHAQ与任何这些病理变化相关。相比之下,疼痛的皮肤症状与SHAQ中度相关（r=0.413，P=0.0073），Skindex-29的三个领域：症状，情绪和功能。Skindex-29表明dcSSc患者的皮肤症状几乎与牛皮癣或特应性皮炎患者的皮肤症状一样严重。
结论：患者报告的皮肤症状与皮肤的临床和病理指标相关。经过验证的患者报告的皮肤症状仪器可能会大大提高对SSc皮肤病的评估。
