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New insight into RA patient priorities and motivators for clinical trial involvement

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 development, this new RAID scoring system ensures that clinical measures by healthcare professionals also reflect what really matters from a patient perspective. Reassuringly, many of the aspects found to be important to patients are reflected in standard clinical quality of life measures, but RAID goes one step further in ensuring the experience of living with RA is fully taken into consideration when assessing the effectiveness of interventions."

Patient motivation in clinical trial enrolment

The second initiative is a study that sought to understand patient perspectives and motivators for participating in clinical trials, in order to help encourage active participation in future research. 60 RA patients attending various rheumatology departments in Romania were interviewed with a questionnaire exploring possible reasons for participating in clinical research, as well as aspects of clinical trials that were perceived drawbacks to enrollment. Data were analysed using SPSS 13.0 (a statistical and data management package for analysts and researchers) and one way Anova (an analysis of variance).

The study showed that the two reasons that patients considered the most important when agreeing to participate in clinical trials were potential benefits to themselves (90%) or other patients (77%) and to enhance knowledge and understanding of RA (83%). Many patients (72%) also cited trust in their physician as an important deciding factor and a notable number considered free complete blood tests (63%) and payment (27%) and as incentives, especially those patients with lower levels of education (p=0.03, p=0004 respectively Anova). Interestingly, almost a third (27%) of patients indicated they would be especially motivated to be involved in clinical trials in order to report on adverse events, further demonstrating the altruistic nature of many patients' motivation and backing up their self-reported commitment to the advancement of RA understanding overall.

Disincentives for involvement included: placebo effect, treatment discontinuation, limited previous experience, availability of alternative therapies, and potential adverse events.

Researcher, Mrs Bianca Dumitrescu of the 'Carol Davila' University of Medicine and Pharmacy, Romania, commented: "By analysing patients' reasons behind entering into clinical trials, we have gathered a wealth of information that can inform the design of future research and the ways in which patients are recruited, to maximise both their enrollment and their experience as clinical trial participants."


Contact: Rory Berrie
European League Against Rheumatism

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