UC San Diego

Rationale. Systemic Sclerosis (SSc, scleroderma) is a rare and progressive rheumatic disease of unknown etiology and heterogeneous presentation that results in fibrosis of the skin and internal organs. A common and distressing symptom of SSc is disfigurement in visible and socially relevant areas of the body (i.e., face and hands). Disease-related changes in appearance have been associated with body image dissatisfaction and social anxiety. Although there have been studies identifying correlatesof body image dissatisfaction, there is a need for an examination that considers the complex relationships among the personal and social aspects of appearance changes. The present study used latent profile analysis (LPA) to identify body image typologies. Identified groups were then compared on key sociodemographic, medical, and psychosocial variables.

Design. The sample consisted of 942 patients with physician-confirmed SSc enrolled in the Scleroderma Patient-centered Intervention Network (SPIN) Cohort who completed study questionnaires from April 2014 through October 2016. Patients in the SPIN Cohort were enrolled at 28 centers from Canada, the United States, and the United Kingdom. Prior to running the analysis, the sample was randomized into two different groups that were treated as independent samples (N = 469 in Sample 1 and N = 473 in Sample 2); this randomization was completed to allow for a replication analysis of the findings. For the first aim, exploratory LPA was used to derive categorical latent variables that signified profiles of similarly scoring individuals using one indicator of objective skin involvement, three indicators of subjective body image, and three indicators of social anxiety. For the second aim, group differences were examined, using the Lanza three-step method for modeling auxiliary variables, for selected sociodemographic, medical, and psychosocial variables.

Results. In both samples, a two-profile solution was derived. These two classes were substantively analyzed for patterns of scores and termed the Appearance Comfortable (n = 334 and n = 375 in Sample 1 and Sample 2, respectively) and Appearance Distressed (n = 135 and n = 98 in Sample 1 and Sample 2, respectively) groups. In both samples, younger age, diffuse disease subtype, and the presence of hypo/hyper-pigmentation were associated with membership in the Appearance Distressed group. Additionally, patients in the Appearance Distressed group had significantly higher scores on measures of depressive and anxious symptoms and physical disability.

Conclusions. The present study was the first to use LPA in the context of body image in SSc, and the first study to identify typologies of patients based on indicators of body image in any disfiguring condition. Two distinct groups were identified distinguishing between an Appearance Comfortable group, comprised of patients with lower objective skin involvement, better body image, and lower social anxiety and an Appearance Distressed group including patients who had higher objective skin involvement, poorer body image, and higher social anxiety. Interestingly, although the differences in objective skin involvement were relatively small, the differences in body image and social anxiety scores were relatively large. This suggests that the body image experience in SSc is driven by psychosocial factors beyond objective appearance. The results also elucidated variables that can indicate likely group membership and help identify which individuals may be most vulnerable to poorer body image-related outcomes.