Novel Scale for Scleroderma Patients Measures Social Avoidance Related to Body Image

People with clinical manifestations that affect appearance, such as those with systemic sclerosis (SSc), are more likely to exhibit social avoidance behaviors due to body image concerns. In a recent study, the Canadian Scleroderma Research Group described a new scale able to measure social avoidance in patients with SSc, often called scleroderma.

The study, “Development and Validation of the Body Concealment Scale for Scleroderma,” published in the journal Arthritis Care and Research, showed that the novel Body Concealment Scale for Scleroderma (BCSS) is a valid measure of body concealment that may help develop interventions to support people living with scleroderma.

Concerns about body image are particularly common in people with visible differences due to disfiguring medical illnesses or injuries. Most people with appearance changes exhibit social anxiety along with a fear of negative evaluation from others, which results in real difficulties in healthy social interactions where attention may be given to physical appearance.

Patients with scleroderma may exhibit disease manifestations in their face, neck, and hands — all socially relevant body parts. These could include changes in skin pigmentation, visible dilation of blood vessels beneath the skin, hand contractions, and changes in facial features. Such manifestations are associated with increased dissatisfaction in body image along with social discomfort, depression, and lower self-esteem.

Usually, concealment behaviors include the use of clothing to hide certain body parts, but for people with scleroderma, changes in the hands and face are difficult to hide. While this may have serious implications for the patients, there are no current measures that reflect appearance-related concealment behaviors in these patients.

Researchers have now developed the 13-question BCSS based on modifications to the Body Image Avoidance Questionnaire (BIAQ). While BIAQ includes items related to concealment with clothing, focusing on weight, shape, and size, the BCSS also includes items that reflected scleroderma-specific behaviors, including the use of makeup to hide skin discoloration, avoiding handing objects to people or shaking hands, as well as hiding their hands.

To develop their scale, the investigators conducted preliminary testing of several items from the BIAQ, as well as new items, in 93 scleroderma patients who underwent treatment at the Johns Hopkins Scleroderma Center. Then, 742 participants in the Canadian Scleroderma Research Group were included in the validation sample, where the BCSS was compared with other measures of body image distress, symptoms of depression, and pain.

The investigators found a correlation with the Concealment with Clothing and Concealment with Hands and Social Discomfort subscale scores on the Brief-Satisfaction with Appearance Scale. In addition, moderate correlations were observed with the McGill Pain Questionnaire, which reflects sensory pain, as well as with the Center for Epidemiologic Studies Depression Scale and Patient Health Questionnaire-9, both of which assess the frequency of depression symptoms.

“The BCSS sum score is a valid indicator of body concealment in SSc that extends the concepts of body concealment and avoidance beyond the realms of body shape and weight to concerns of individuals with visible differences from SSc,” the authors wrote, stating that this tool may lead to the development of interventions that offer better support for scleroderma patients.