Paris, France, Friday 13 June 2008: Two new initiatives designed to improve the management of rheumatoid arthritis through patient participation were presented today at EULAR 2008, the Annual Congress of the European League Against Rheumatism in Paris, France.
The RAID disease impact score
The first, a EULAR initiative entitled 'Elaboration and validation of the EULAR patient-derived Rheumatoid Arthritis Impact of Disease' (RAID) score, was based on patients' perceptions of the impact of disease on dimensions of health. 100 patients from 10 European countries worked alongside healthcare professionals to identify the true everyday impact of rheumatoid arthritis (RA) on their lives, and enable the development of a new disease impact score.
Tools for assessing impact of RA on a person's life have traditionally focused on areas that healthcare professionals assume to be important. However, the project Steering Group, comprising individuals with RA as well as rheumatologists from ten countries (France, Greece, Estonia, Italy, Netherlands, Norway, Romania, Turkey, Spain, UK), addressed the issue from the patient's perspective and considered the many aspects of health and life that are most disrupted by people living with RA, and then asked a group of 100 patients to rank these in order of importance.. A further group of 50 patients from each country then distributed 100 points across the top 7 scoring aspects, to illustrate how much each one impacts their life.
The patients rated pain (21%), function (19%) and fatigue (17%) as the most important in terms of affect on their lives. The other important domains affected by RA according to the patients were emotional well-being (12%), sleep (11%), coping (11%) and physical well-being (9%).
Miss Pamela Richards, a Patient Research Partner with the University of Bristol and University of the West of England, UK, said, "Thanks to the direct involvement of patients in its dev
|Contact: Rory Berrie|
European League Against Rheumatism