Background From the patient’s point of view, the pharmacologic management of rheumatoid arthritis (RA) may be considered as complex considering the large choice of available treatments. However, the involvement of the patients in therapeutic decisions may be useful to increase adhesion.
Objectives To gather data and identify barriers about the participation in the choice of the treatment in patients with RA in the context of a support program dedicated to this question.
Methods A steering committee composed of a physician, a psychologist, two patients and two representatives of the French Association of RA patients (AFPric) has developed a questionnaire-patient. Data about the disease, the treatments, knowledge of the different treatments, participation in therapeutic choices and perceived needs were collected.
The survey, conducted with the Survey Monkey software, was sent by internet to the 1982 subscribers to the newsletter of the association. It could be completed online between the 16th and 28th March 2011 anonymously.
Results 719 subscribers have responded to the questionnaire (39% response rate). 669 completed questionnaires were from individuals with RA and were analyzed. Among the 669 RA patients: 85% were women, mean age 53 years (min-max: 22-81). Disease duration was below 2 years in 12%, 3 to 5 years in 21%, 6 to 12 years in 31% and >12 years in 36%. 87% (579/669) of patients lived at less than 50 km from a hospital. 52% (351/669) were or had been treated with biologics. 85% (570/669) reported knowing the difference between Disease-Modifying Antirheumatic Drugs (DMARDs) and symptomatic treatments and 64% (430/669) the difference between DMARDs and biologics.
79% (527/669) had at least once given their opinion about the prescription of one of their treatment (DMARDs, biologics and steroids). 38% (255/669) had given their advice about the initiation of a biotherapy and 20% (131/669) for the choice of the biotherapy. About 21% (142/669) had never participated in any therapeutic choice concerning their RA: 32% (46/142) explained that by the lack of knowledge about the treatments, 31% (44/142) by the relationship with their doctor, 8.5% (12/142) by the scare to take responsibility and 9% (13/142) stated that their opinion was never asked. The more longer was the disease duration, the more patients gave their opinion on the choice of the treatment.
625 of 637 individuals who have answered specifically to the question (98%) found important to participate in treatment decisions. Regarding perceived needs relating to this choice, 61% (410/669) would like an internet information media to help them to get involved in this decision, 43% (290/669) a paper media and 51% (340/669) informations during a congress for patients dedicated to RA or a local regional meeting.
Conclusions This survey illustrates the importance for patients with RA to be involved in their choice of treatment and the need to support them in this process through different types of media, especially for patients with shorter disease duration.
Disclosure of Interest None Declared
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