Vanessa L. Malcarne

Evaluation of the Satisfaction with Appearance Scale and Its Short Form in Systemic Sclerosis: Analysis from the UCLA Scleroderma Quality of Life Study

Objective. Changes in appearance are common in patients with systemic sclerosis (SSc) and can significantly affect well-being. The Satisfaction with Appearance Scale (SWAP) measures body image dissatisfaction in persons with visible disfigurement; the Brief-Satisfaction with Appearance Scale (Brief-SWAP) is its short form. The present study evaluated the reliability and validity of SWAP and Brief-SWAP scores in SSc. Methods. A sample of 207 patients with SSc participating in the University of California, Los Angeles Scleroderma Quality of Life Study completed the SWAP. Brief-SWAP scores were derived from the SWAP. The structural validity of both measures was investigated using confirmatory factor analysis. Internal consistency reliability of total and subscale scores was assessed with Cronbach’s alpha coefficients. Convergent and divergent validity was evaluated using the Center for Epidemiological Studies Depression Scale, the Health Assessment Questionnaire-Disability Index, and the Medical Outcomes Study Short Form-36 questionnaire. Results. SWAP and Brief-SWAP total scores were highly correlated (r = 0.97). The 4-factor structure of the SWAP fit well descriptively; the 2-factor structure of the Brief-SWAP fit well descriptively and statistically. Internal consistencies for total and subscale scores were good, and results supported convergent and divergent validity. Conclusion. Both versions are suitable for use in patients with SSc. The Brief-SWAP is most efficient; the full SWAP yields additional subscales that may be informative in understanding body image issues in patients with SSc.

Using Optimal Test Assembly Methods for Shortening Patient-Reported Outcome Measures: Development and Validation of the Cochin Hand Function Scale-6: A Scleroderma Patient-Centered Intervention Network Cohort Study.

To develop and validate a short form of the Cochin Hand Function Scale (CHFS), which measures hand disability, for use in systemic sclerosis, using objective criteria and reproducible techniques.

Assessment of daily and weekly fatigue among African American cancer survivors

This investigation evaluates two common measures of cancer-related fatigue, one multidimensional/retrospective and one unidimensional/same day. Fifty-two African American survivors of diverse cancers completed fatigue visual analogue scales once daily, and the Multidimensional Fatigue Symptom Inventory-Short Form (MFSI-SF) once weekly, for four weeks. Zero-order correlations showed retrospective fatigue was significantly related to average, peak, and most recent same-day fatigue. Multilevel random coefficient modeling showed unidimensional fatigue shared the most variance with the MFSI-SFs General subscale for three weeks, and with the Vigor subscale for one week. Researchers and clinicians may wish to prioritize multidimensional measures when assessing cancer-related fatigue, if appropriate.

Development and Validation of the Body Concealment Scale for Scleroderma.

Body concealment is a component of social avoidance among people with visible differences from disfiguring conditions, including systemic sclerosis (SSc). The study objective was to develop a measure of body concealment related to avoidance behaviors in SSc.

Biopsychosocial Typologies of Pain in a Cohort of Patients With Systemic Sclerosis

Despite being a common problem in systemic sclerosis (SSc; scleroderma), the extant literature on pain has primarily focused on biomedical correlates, or bivariate relationships with a few psychological characteristics. There is a need to investigate the more heuristic biopsychosocial model, which incorporates the simultaneous contributions of medical, psychological, and social variables in understanding pain.

Validation of the Social Appearance Anxiety Scale in Patients With Systemic Sclerosis: A Scleroderma Patient-Centered Intervention Network Cohort Study

Systemic sclerosis (SSc) is an autoimmune disease that can cause disfiguring changes in appearance. This study examined the structural validity, internal consistency reliability, convergent validity, and measurement equivalence of the Social Appearance Anxiety Scale (SAAS) across SSc disease subtypes.

Validation of the Body Concealment Scale for Scleroderma (BCSS): Replication in the Scleroderma Patient-centered Intervention Network (SPIN) cohort

Body concealment is an important component of appearance distress for individuals with disfiguring conditions, including scleroderma. The objective was to replicate the validation study of the Body Concealment Scale for Scleroderma (BCSS) among 897 scleroderma patients. The factor structure of the BCSS was evaluated using confirmatory factor analysis and the Multiple-Indicator Multiple-Cause model examined differential item functioning of SWAP items for sex and age. Internal consistency reliability was assessed via Cronbachs alpha. Construct validity was assessed by comparing the BCSS with a measure of body image distress and measures of mental health and pain intensity. Results replicated the original validation study, where a bifactor model provided the best fit. The BCSS demonstrated strong internal consistency reliability and construct validity. Findings further support the BCSS as a valid measure of body concealment in scleroderma and provide new evidence that scores can be compared and combined across sexes and ages.

Reliability and Validity of Three Versions of the Brief Fear of Negative Evaluation Scale in Patients With Systemic Sclerosis: A Scleroderma Patient-Centered Intervention Network Cohort Study

Fear of negative evaluation is a common concern among individuals with visible differences but has received limited attention in systemic sclerosis (SSc), which can involve substantial changes to appearance. The Brief Fear of Negative Evaluation Scale (BFNE) was specifically designed to evaluate fear of negative evaluation. There are currently 3 versions of the BFNE with strong demonstrated measurement properties: two 8‐item versions (BFNE‐S, BFNE‐8) and one 12‐item version (BFNE‐II). The present study evaluated these versions in SSc, and identified the most appropriate version for use among SSc patients.

Structural validity of the rheumatology attitudes index in systemic sclerosis: Analysis from the ucla scleroderma quality of life study

Objective. To evaluate the structural validity of the Rheumatology Attitudes Index (RAI), a widely used measure of rheumatic disease–related helplessness in patients with systemic sclerosis (SSc). Methods. Patients with physician-confirmed SSc from the University of California, Los Angeles (UCLA) Scleroderma Quality of Life Study (n = 208) received clinical examinations and completed self-report questionnaires. The structural validity of the RAI was examined through confirmatory and exploratory factor analysis (CFA/EFA). Results. A tenable factor structure was not identified through CFA or EFA. Conclusion. The present structural analysis did not support the use of the RAI with SSc patients.

Coping with the Disfigurement of Scleroderma: Facial, Skin, and Hand Changes

Changes in appearance are a common and distressing aspect of scleroderma. Disfigurement in scleroderma often occurs in areas of the body that are both visible and socially relevant (e.g., face, hands), which can contribute to increased social anxiety and avoidance. A case study is provided to share examples of common concerns and challenges associated with treating patients with scleroderma who are experiencing body image distress; social, self-esteem, mood, and sexual impacts of body image distress are also discussed.The presence of significant body image is not always associated with severity of appearance changes, and open communication around changes in appearance is important. Referrals to mental health professionals should be initiated as appropriate.