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Validation of the International Classification of Functioning, Disability and Health (ICF) Core Set for rheumatoid arthritis from the patient perspective using focus groups

DOI: 10.1186/ar1956

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Abstract:

Functioning is recognized as an important study outcome in rheumatoid arthritis (RA). The number of clinical studies addressing functioning as a study endpoint in patients with RA has steadily increased during the past decade [1]. These investigations have predominantly been guided by the medical perspective, from which the measurement of functioning and health is required to evaluate the patient-relevant outcomes of an intervention and from which functioning and health are seen primarily as a consequence of the disease [2]. Many of these investigations include patient-oriented instruments, for example, patient and proxy self-reports on health status, quality of life, and health preferences. In rheumatology, the Health Assessment Questionnaire Disability Index (HAQ [3]) and the Arthritis Impact Measurement Scales (AIMS2 [4]), which can be considered a generic instrument specific for RA, are widely used.These instruments have also been developed according to the medical perspective and in line with the current concept in outcomes and quality-of-life research of condition-specific measures [5], that is, they are based on the assumption that different conditions are associated with salient patient problems in functioning. The individual influence of the environment and personal factors is, however, rarely taken into account [6,7]. In addition, widely used RA-specific health-status measures, like the Health Assessment Questionnaire Disability Index, mainly address activities far more than participation [8]. However, patients' experiences of functioning are determined by their interaction with the environment and their own personal characteristics and not only by the health condition [9-12]. RA is also very much associated with the inability to continue working, ultimately leading to the experience of restriction in participation [13-16]. Thus, a very comprehensive approach is required when addressing RA.The bio-psycho-social model of Functioning, Disability and Health o

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