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Title: Patient perspective on outcomes in rheumatology - A position paper for OMERACT 9
Author: Kirwan, J., Newman, S., Tugwell, P. & Wells, G.
Date Published: 2009
Reference: Journal of Rheumatology, 36(9), 2067-2070.
Are service users or carers authors: Yes

Abstract: This paper discusses the work done in preparation for OMERACT 9, an international consensus conference on outcome measures used in rheumatology clinical trials, which was held in 2008.
    
At OMERACT 6 in 2002, the patient perspective was included for the first time. This led to the recognition that there were outcomes of importance to patients that had not been previously measured. These included a sense of well-being, fatigue and disturbed sleep.
   
In the first instance a lot of work was put into developing new ways of measuring fatigue. As a result, fatigue is now routinely assessed in all studies of rheumatoid arthritis.
   
This paper summarises the work that has been done since to develop ways of measuring sleep disturbance. In addition, it discusses the development of an Effective Consumer Scale which will assess patients ability to manage their own healthcare, patients' evaluation of educational and psychological interventions and the concept of a 'core set' of patient outcomes, that could become a requirement for all clinical trials in rheumatology. These topics were discussed at the Patient Perspective Workshop at the conference in 2008.

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Categories: health
Designing research
impact on research
impact of public involvement
journal article

Date Entered: 2010/09/28

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