Appearance self-esteem in systemic sclerosis--subjective experience of skin deformity and its relationship with physician-assessed skin involvement, disease status and psychological variables.

OBJECTIVES: To determine the importance of skin deformity in systemic sclerosis (SSc) relative to other disease stressors and to find psychological correlates of appearance self-esteem (ASE) after controlling for disease status. METHODS: Disease-related stressors, symptoms, physical and psychological functioning, social support, coping styles, cognitions and ASE were assessed in 123 patients with SSc. A rheumatologist determined disease duration, SSc subtype, presence of organ involvement and skin-thickness scores. Stepwise hierarchical regression analysis of disease-related cognitions on ASE was performed after controlling for selected variables. RESULTS: Skin deformities proved a core stressor of the disease, only preceded by fatigue. Physician-assessed disease status, including modified Rodnan skin score, was unrelated to ASE. Sex, self-reported functioning and symptoms were related to ASE and used as control variables. Both acceptance and anxiety correlated strongly with ASE. The stepwise regression procedure only identified the disease-related cognition acceptance. CONCLUSIONS: In SSc, ASE proved unrelated to the extent of skin thickness. Psychological interventions aimed at boosting ASE should primarily target the psychological factors acceptance and anxiety.

Disease related use of the internet in chronically ill adults: current and expected use.

OBJECTIVE: To determine discrepancies in patients' current use and expected future use of the internet for different functions. METHOD: A short questionnaire was developed to assess patients' current use of the internet for three functions: "seeking information", "mutual support", and "care provider contact". This questionnaire was assessed online during 1 week. For each of the functions, scales were computed to assess frequency of use. The same items were used to assess patients' expected future use. Differences in scale score between current use and expected use were calculated to determine discrepancies. RESULTS: 220 patients completed the questionnaire. Patients are frequent users of the internet. The three functions are largely independent of each other and independent of the type of disease and demographics. Most often patient use the internet to find information about the disease or treatment. The discrepancy between current and expected use is largest for the function "care provider contact". CONCLUSION: Based on these findings it seems that patients are most strongly interested in an increased possibility of using the internet to contact their healthcare providers.