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.

The Short Version of the Sequential Occupational Dexterity Assessment based on individual tasks' sensitivity to change.

OBJECTIVE: The Sequential Occupational Dexterity Assessment (SODA) is a reliable and valid instrument to measure bimanual hand function in rheumatoid arthritis. Since administering SODA is time-consuming, the aim of this study is to construct a short SODA (SODA-S). METHODS: Dexterity was measured with the SODA twice (with an interval of one year) in 94 patients. Item analyses based on the different SODA tasks were carried out to determine which of the 12 individual tasks were most responsible for the observed changes in dexterity. RESULTS: Six of the 12 SODA tasks were identified as sensitive to change. Based on these 6 tasks, the SODA-S was computed. Internal consistency of the SODA-S is good (Cronbach's alphas at baseline and followup were 0.82 and 0.85, respectively). The correlation between the SODA and SODA-S is 0.92. This means that the information gathered from the SODA-S is almost equal to the information gathered from the full SODA. Norm scores are provided for both instruments. CONCLUSION: The SODA-S is a good alternative to the full SODA in following patient's dexterity in daily practice. However, when evaluating the effect of specific hand treatment, the full SODA may be preferred.

Predictors of changes in observed dexterity during one year in patients with rheumatoid arthritis.

OBJECTIVE: To determine which disease-related variables predict loss of dexterity in patients with rheumatoid arthritis (RA). METHODS: A random sample of 94 RA patients was measured twice 1 yr apart. Dexterity, or hand-related disability, was measured with the Sequential Occupational Dexterity Assessment (SODA). The SODA measures dexterity in activities of daily life based on the observation of standardized tasks. Impairment of the hands, disease activity, pain and self-reported functioning were additionally assessed. RESULTS: After 1 yr, observed dexterity was significantly decreased. Change in dexterity was predicted by impairment of the hands at baseline. Changes in dexterity were related to changes in grip strength, disease activity indicators, self-care, depressive mood and cheerful mood. An increase in the number of swollen joints was most strongly correlated with a decrease in dexterity, even after controlling for impairment at baseline. CONCLUSION: It was concluded that even in patients with longer disease duration, observed dexterity declines gradually.

Quality of life 3. Rheumatoid arthritis.

It has increasingly been recognized that for the evaluation of interventions in patients with rheumatoid arthritis not only physician-oriented variables, like laboratory or radiographic assessments but also patient-oriented variables such as quality of life are of importance. Many different arthritis-specific quality of life instruments have been developed in recent years using different or no definition at all about the concept 'quality of life'. In this review a generally accepted definition of quality of life, existing of three components, is presented. The interrelationship between quality of life and all the different variables used in assessing disease activity in rheumatoid arthritis is discussed.