系统性硬化症相关钙沉积患者体验：一项国际研究，为临床试验、实践以及 Mawdsley 钙沉积问卷的开发提供信息。
Patient Experience of Systemic Sclerosis-Related Calcinosis: An International Study Informing Clinical Trials, Practice, and the Development of the Mawdsley Calcinosis Questionnaire.
机构信息
New Orleans Scleroderma and Sarcoidosis Patient Care and Research Center, New Orleans, LA, USA; University Medical Center-Comprehensive Pulmonary Hypertension Center and Interstitial Lung Disease Clinic Programs, New Orleans, LA, USA; Section of Pulmonary Medicine, Louisiana State University School of Medicine, New Orleans, LA, USA; Tulane University School of Medicine, New Orleans, LA, USA.
Department of Rheumatology, Hospital for Special Surgery, New York, NY, USA.
出版信息
Rheum Dis Clin North Am. 2023 May;49(2):463-481. doi: 10.1016/j.rdc.2023.01.017.
Systemic sclerosis (SSc) -related calcinosis can be a debilitating, constantly painful, poorly understood vascular complication of calcium hydroxyapatite deposition in soft tissue structures that affects approximately 40% of both limited and diffuse cutaneous SSc subtypes. This publication describes the iterative and multitiered international qualitative investigations that yielded remarkable insights into natural history, daily experience, and complications of SSc-calcinosis providing pivotal information for health management. Patient-driven question development and field testing, according to Food and Drug Administration guidance, propelled the development of a patient-reported outcome measure for SSc-calcinosis, the Mawdsley Calcinosis Questionnaire.
系统性硬化症（SSc）相关的钙质沉着症是一种使人虚弱、持续疼痛、对血管造成严重影响的疾病，其特征是钙羟磷灰石在软组织结构中沉积，大约影响 40%的局限性和弥漫性皮肤型 SSc 亚型。本出版物描述了迭代和多层次的国际定性研究，这些研究深入了解了 SSc 钙质沉着症的自然病史、日常体验和并发症，为健康管理提供了重要信息。根据美国食品和药物管理局的指导意见，患者驱动的问题开发和现场测试推动了 SSc 钙质沉着症患者报告结局测量工具——Mawdsley 钙质沉着症问卷的开发。
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