Cutaneous concerns of scleroderma patients

The clinical features of facial and oral involvement in scleroderma are striking. We conducted a survey of patients with systemic sclerosis (scleroderma). The purpose of our study was to ascertain what was most bothersome aesthetically to scleroderma patients. We also looked at the differences between age groups and genders. The survey was mailed to 1,000 individuals who subscribe to a national lay group organization. We received 303 completed surveys indicating the patient's age, gender, age at onset of disease, and a checklist of 14 physical variables involving the central face and non-face. The respondents were asked to rate their level of concern [on a scale of great (1) -moderate (2) -little (3) -none (4)] in regards to 14 different physical variables. The respondents consisted of 92% females and 8% males. The mean age was 59 years +/- 13 (SD), and the median age was 60. The mean and median age at diagnosis was 45 years +/- 15 (SD). The percentage of respondents expressing concern for specific features was the following: for thin lips (73%), mouth furrows (80%), loss of facial lines (68%), and a smaller, tighter mouth (77%). There was less concern over the non-face features. The percentage of respondents expressing no concern was the following: for absence of sweating (57%), skin darkening (50%), nail dystrophy (57%), and skin atrophy (63%). There was a highly statistically significant difference (p<0.0001) between those respondents concerned with central face features vs. non-face features. With advancing age and longer disease duration, there was increased concern over the aforementioned central face features (p<0.0001). The vast majority of patients with systemic sclerosis have great concerns over changing facial features, and this worsens with age.