Living with a visible difference: Assessing body image and appearance concerns in Scleroderma

People living with visible appearance differences, whether present from birth or acquired through injury or illness, often experience psychosocial and psychological challenges. These include negative self-perceptions such as low self-esteem, shame, body image dissatisfaction, and depression; as well as challenges related to social interactions such as fear of negative evaluation, social avoidance, and social anxiety. Systemic sclerosis, or scleroderma (SSc), is a rare, chronic, autoimmune connective tissue disease that leads to significant physical appearance changes, which have been linked to negative outcomes including body image dissatisfaction, social discomfort and anxiety, as well as general psychological distress. In order to advance research in this area, however, and support the design of adequate psychosocial interventions, more disease-specific patient-reported outcome measures related to body image concerns are needed. In addition, an increased understanding of how disease and sociodemographic factors are associated with these outcomes is required to inform intervention content. In order to address these gaps, four independent studies were conducted and included in this thesis. Study One involved the development and validation of a new patient-reported outcome measure of body concealment and avoidance behaviours specific to SSc, the Body Concealment Scale for Scleroderma (BCSS), including examination of its basic psychometric properties. Study Two constituted a replication of Study One, with the extension of determining the measurement equivalency of BCSS items across sex and age groups. The findings of this study replicated those of Study One and further demonstrated that BCSS scores can be compared and combined across females and males with SSc and those of different ages without concern that measurement differences influence results. Study Three examined the measurement equivalency of a commonly used measure of social discomfort and body image dissatisfaction relative to acquired disfigurements in SSc, the Satisfaction with Appearance Scale (SWAP), across language groups. Findings from this study enhanced existing psychometric evidence by showing that SWAP items do not function differently across English-and French-speaking Canadian SSc patients and that scores can be pooled across these language groups. Study Four explored the association of key sociodemographic variables with the presence of appearance concerns among patients living with SSc. Main findings from this study revealed that female patients had significantly higher odds of reporting appearance concerns than male patients and that older age was significantly associated with a reduction in the odds of reporting appearance concerns. There was no significant difference in the odds of reporting appearance concerns between Black and White patients, after accounting for the influence of sociodemographic and disease characteristics. Finally, women and men with SSc were more likely to report appearance concerns than members of the general population. In sum, the body of the presented research involved the creation of a new disease-specific patient-reported outcome measure and potentially useful clinical assessment tool of body concealment behaviours in SSc, including establishing its psychometric properties. This thesis also highlighted the importance of evaluating the measurement equivalency of body image questionnaires across diverse groups of patients with SSc and demonstrated differences in key sociodemographic and disease characteristics, such as sex, age, and presence of hand contractures, in the experiencing of body image concerns. Implications and future directions for research are discussed.

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