Suggesting a holistic approach to rheumatology care, the study results indicate that the illness and outcomes have to be evaluated within an individual RA patient's total life situation, described in the identified themes: 'Normal life', 'Physical capacity', 'Independence' and 'Well-being'. Development and validation of measurements covering these issues is suggested. More research is needed about communication and how patients experience their roles in the rheumatology clinic.
The results of this study support the view that more psychosocial support is required to encourage the recently diagnosed RA patient in the new situation of having a chronic disease.
The Quality of Life Scale (QOLS) was translated into Swedish and reliability and validity was studied. The Swedish version (QOLS-S) was given to 100 women with rheumatoid arthritis or systemic lupus erythematosus along with the Arthritis Impact Measurement Scales and a visual analog pain scale. Disease activity was also measured using the Ritchie Articular Index and a patient version of the Systemic Lupus Activity Measure. Results indicated that the QOLS-S had high test-retest reliability (r = .84 for a 4-week interval) and internal consistency reliability (alpha = .82 at Time 1 and .88 at Time 2). An hypothesis that the QOLS-S would have low to moderate correlations with measures of health status and disease activity was supported. We conclude that the QOLS-S is a reliable and valid measure of quality of life in Swedish women with RA and SLE and that it provides a measure of quality of life that is distinct from health status and disease activity.
A technique for assessing the overall consequences of disease is introduced, comprising a Swedish version of a behaviour-based measure, the Sickness Impact Profile (SIP). Measurement characteristics of the profile are defined in an epidemiological study of 147 women with rheumatic disorders. The drop-out rate was 7.5%. Cross-cultural evidence of the validity of the SIP was obtained in this study. Test-retest reliability was substantial. A high level of validity of the Swedish version was demonstrated, as assessed by hypothesized significant relationships with selected functional, psychological, and social correlates. The profile was able to describe the various sickness impacts in a specific and sensitive manner. In the epidemiological setting, the subscales representing Ambulation, Body care and movement, Emotional behaviour, Social interaction, Sleep and rest, Home management and Recreation and pastimes, all showed discriminatory capacity. The categories Mobility, Alertness behaviour, Communication, Work, and Eating discriminated less well. The response pattern was recognizably related to rheumatic complaints, emphasizing a broader applicability of this scale in rheumatology.
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