title: The psychological impact of facial changes in scleroderma.
abstract: 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.
authors.affiliation: Department of Plastic and Reconstructive Surgery, Royal Free Hospital, London, UK. alex.clarke@royalfree.nhs.uk
authors.forename: Kavit
authors.initials: K
authors.lastname: Amin
authors.forename: A
authors.initials: A
authors.lastname: Clarke
authors.forename: B
authors.initials: B
authors.lastname: Sivakumar
authors.forename: A
authors.initials: A
authors.lastname: Puri
authors.forename: Z
authors.initials: Z
authors.lastname: Fox
authors.forename: V
authors.initials: V
authors.lastname: Brough
authors.forename: C P
authors.initials: CP
authors.lastname: Denton
authors.forename: E M
authors.initials: EM
authors.lastname: Peter
authors.forename: P
authors.initials: P
authors.lastname: Butler
authors.forename: M D
authors.initials: MD
authors.lastname: Butler
mesh_terms: D005145:Face / Q000473:pathology / Q000503:physiopathology*; D006801:Humans; D008131:London / Q000453:epidemiology; D008875:Middle Aged; D045745:Scleroderma, Limited / Q000150:complications / Q000473:pathology / Q000523:psychology*; D013315:Stress, Psychological / Q000453:epidemiology*; D011795:Surveys and Questionnaires