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首页> 外文期刊>Rheumatology >Establishment and partial validation of a patient skin self-assessment questionnaire in systemic sclerosis.
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Establishment and partial validation of a patient skin self-assessment questionnaire in systemic sclerosis.

机译：系统性硬化症患者皮肤自我评估问卷的建立和部分验证。

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OBJECTIVES: To construct a patient self-assessment questionnaire testing whether patients can provide valid information about their skin thickness, tethering and thinness. METHODS: The questionnaire contained questions about the 17 body areas identical to those investigated in the Modified Rodnan Skin Score (MRSS). The baseline and 1 yr follow-up values of thickening, tethering and thinning were scored on a scale of 0-3, by 131 consecutive patients. RESULTS: The questionnaire was feasible. The test-retest reliability was good, with an intraclass correlation coefficient of 0.5-0.6. The MRSS correlated with the 17-area thickness score (rho = 0.435, P < 0.001). Both the patient-reported thickness and tethering scores and the expert-measured MRSS and tethering scores correlated highly with each other (rho = 0.523, P < 0.001 and rho = 0.637, P < 0.001, respectively). The patient-reported thinness scores did not show any correlation with the examiner-measured skin thickening/tethering. All thickness-related scores were sorted into the same factor by principal component analysis. Conversely, skin thinness scores were sorted into a distinct factor. Skin thickness scores reported by diffuse SSc patients were different from those of the limited SSc cases (P < 0.05). CONCLUSIONS: We validated the skin thickness domain of the questionnaire, except the responsiveness. Because of the low mean MRSS of patients in this investigation, the patient self-assessment validation procedure should be repeated with cases exhibiting more extensive skin involvement. Patient-reported and examiner-measured tethering may not be used as independent instruments of skin involvement. The skin thinness domain may contain valuable independent information, therefore it also merits further investigation.
机译：目的：构建患者自我评估问卷，以测试患者是否可以提供有关其皮肤厚度，系留力和稀薄度的有效信息。方法：问卷包含有关17个身体区域的问题，这些问题与改良的Rodnan皮肤评分（MRSS）中的调查相同。连续131例患者以0-3评分对增厚，系留和变薄的基线和1年随访值进行评分。结果：该问卷是可行的。重测信度良好，组内相关系数为0.5-0.6。 MRSS与17个区域的厚度评分相关（rho = 0.435，P <0.001）。患者报告的厚度和系留分数与专家测得的MRSS和系留分数都高度相关（rho = 0.523，P <0.001和rho = 0.637，P <0.001）。患者报告的稀薄度评分与检查者测得的皮肤增厚/系留没有任何相关性。通过主成分分析将所有与厚度相关的分数分类为同一因素。相反，皮肤稀薄度分数被分类为一个独特的因素。弥漫性SSc患者报告的皮肤厚度评分与有限SSc患者的皮肤厚度评分不同（P <0.05）。结论：我们验证了问卷的皮肤厚度域，除了响应性。由于本研究中患者的平均MRSS较低，因此如果患者的皮肤受累范围更大，则应重复进行患者自我评估验证程序。患者报告和检查者测量的系留绳不得用作皮肤受累的独立工具。皮肤稀疏域可能包含有价值的独立信息，因此也值得进一步研究。

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