Department of Plastic and Reconstructive Surgery, Royal Free Hospital, London, UK.
Psychol Health Med. 2011 May;16(3):304-12. doi: 10.1080/13548506.2010.540250.
The physical disabilities associated with scleroderma are well known but the psychological impact of the condition has received less attention. Few studies have examined appearance related issues, most notably of the face. The aim of this study is to evaluate the psychological impact of facial, aesthetic and functional changes in scleroderma. One hundred seventy-one patients with a clinical diagnosis of scleroderma were recruited into the study. Digital photographs were objectively graded into groups based on severity of disfigurement as judged by an observer. Facial movement was recorded using a modified House-Brackmann Grading Scale. Psychological evaluation comprised the Derriford Appearance Scale short-form (DAS), the Noticeability and Worry score and the Hospital Anxiety and Depression Scale (HADS). Severity of disfigurement predicted decreased mouth opening, the extent to which participants judged their appearance as noticeable to others, and the level of appearance-related concern as measured by the DAS24. There was an inverse relationship with age. Facial changes were ranked as the most worrying aspect of the condition. This study shows facial disfigurement impacts on patient with scleroderma independent of functional changes related to systemic disease. The major difficulty is with the perceived noticeably of the condition to other people and the resulting self-consciousness in social encounters.
硬皮病相关的身体残疾是众所周知的，但该疾病对心理的影响却较少受到关注。很少有研究探讨与外表相关的问题，尤其是面部问题。本研究旨在评估硬皮病患者面部容貌、美观和功能变化对其心理的影响。我们招募了 171 名临床诊断为硬皮病的患者参与研究。通过观察者判断，根据毁容的严重程度，将面部数字照片客观地分为几组。使用改良的 House-Brackmann 分级量表记录面部运动。心理评估包括 Derriford 外貌量表简表（DAS）、可察觉性和担忧评分以及医院焦虑和抑郁量表（HADS）。毁容的严重程度预测了张口度的降低，参与者对他人对其外表的可察觉程度的判断，以及 DAS24 评估的与外表相关的担忧程度。与年龄呈负相关。面部变化被列为该疾病最令人担忧的方面。本研究表明，面部容貌的改变会对硬皮病患者造成影响，这种影响独立于系统性疾病相关的功能改变。主要的困难在于其他人对病情的明显感知，以及由此在社交场合产生的自我意识。
