Objective. To measure the need for information about rheumatoid arthritis (RA) and the level of desire for involvement in treatment decisions among patients with RA. To examine the relationship between these preferences and what factors (sociodemographic, disease, treatment, level of disability, and level of knowledge about RA) associate with these preferences. Methods. Questionnaire surveys were mailed to a randomly selected group of 600 patients with RA. Need for information and desire for involvement in decision making were measured using a validated tool (the Autonomy Preference Index). Results. The response rate was 57.3%. The need for information was very high. Information seeking preference scores (median 82.5, interquartile range 80.0 -92.5) were significantly higher (P < 0.001) than decision making preference scores (mean ؎ SD 56.4 ؎ 13.6). Need for information and for decision making were both higher in women than men, and associations with these needs differed in men and women. However, younger age and greater knowledge of RA predicted greater need for decision making. There was no correlation between need for information and for involvement in treatment decisions for either sex (women: r s ؍ 0.09, P ؍ 0.19; men: r s ؍ -0.06, P ؍ 0.54). Conclusion. There was a high level of need for information among patients with RA. Desire for involvement in treatment decision making was significantly lower and did not correlate with need for information. Associations with these needs differed for men and women.
This review identified three main areas of delay to care for patients with IA and potential solutions for each. A co-ordinated effort will be required by the rheumatology and primary care community to address these effectively.
Rheumatoid cachexia is under-recognized in clinical practice. The loss of lean body tissue, which characterizes cachexia, is often compensated for by gain in body fat-so called 'cachectic obesity'-so that 85% or more RA patients have a normal BMI. Severe cachexia with loss of weight leads to increased morbidity and premature mortality but loss of muscle bulk with a normal BMI also associates with poor clinical outcomes. Increasing BMI, even into the obese range, is associated with less joint damage and reduced mortality. Measurement of body composition using DXA and other techniques is feasible but the results must be interpreted with care. Newer techniques such as whole-body MRI will help define with more confidence the mass and distribution of fat and muscle and help elucidate the relationships between body composition and outcomes. Cachexia shows little response to diet alone but progressive resistance training and anti-TNF therapies show promise in tackling this potentially disabling extra-articular feature of RA.
Adequately trained PEs can deliver clearly structured undergraduate skills, teaching with equivalent learning outcomes to those of rheumatology consultants. PEs are a valuable development to augment musculoskeletal education in the face of expanding student numbers.
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