Background The adhesion in treatments (Tts) does not exceed 80% in the chronic inflammatory rheumatisms. To improve this score, it is advisable to question the patients (Pts) about their perception of the treatment, its constraints, its side effects
Objectives Explore the representations of Tts by Pts
Methods A questionnaire was drafted by a group of 6 persons:2 patients, a fram of French Association of the chronic inflammatory rheumatisms (AFP-RIC), a rheumatologist,2 representatives of Pfizer Inc. The questionnaire was sent by e-mail to 1277 member of AFP-RIC, from 20 to 60 years old, with a link towards Survey Monkey between June 17th and July 8th, 2013.
Results We received 525 answers, among which 519 exploitable. 88.9% of Pts are affected by rheumatoid arthritis (RA), 9.8% by spondyloarthritis (SP). 33.6% saw the first symptoms 6 - 12 years ago. 90.2% of the RA are women and 73,4% of the SP. The average age is 52. The rheumatologist prescribed the disease-modifying drug for 94.4% and assures the follow-up for 65.5%, in association with general practitioner for 32.1%. 56% of the Pts consult other healthcare professionals, among whom 62.2% the pharmacist. 51.9% are handled by biotherapy, 66,1% by DMARDS. 81.6% of Pts know the difference between DMARDS and biotherapy. 80.9% changed Tts among which 95,6% know why (72.9% for ineffectiveness, 30,7% for intolerance). Only 22.3% say themselves in remission. The biotherapy is considered binding at 5,13 (10 most forcing), because of the method of administration (44%), frequency (39.7%), mode of preservation (37.1%),displacements to the hospital (34.5%). DMARDS is considered binding in 4.68, corticoids in 5,29. 88.5% know the side effects, 73.6% are worried about it. 53% did not take the biotherapy in the planned day, by forgetting for 38%, because of displacement for 34.2%, by default of motivation for 32.7%, by fear of the side effects for 25.2%. 60,3% do not speak about it to physician. The efficiency of the Tt judges itself for 86.5% by an absence of pan, and for 90.14% by the possibility of attending to its occupations without constraints. 60.6% of the Pts wish to benefit from a tool of follow-up, rather from type memo of pocket than reminder by SMS
Conclusions Pts does not take their treatment according to the modalities prescribed for an accumulation of reasons: fear of the side effects including still unknown, the denial of the disease, the fear of revealing the diagnosis in their more or less close circle of acquaintances. Even if the treatment is maintained, the absence of compliance in the rules of taking makes it less effective, even dangerous. The dialogue with the nursing deserves to be improved: the confidence has to allow to clarify the fears and the unspoken. The physician, but also the pharmacist, the nurses and all the healthcare professionals are concerned. They mean using a common language in agreement with what the patient expects from them and to create a reliable climate which establishes a dialogue on the reality of the treatment and not on what the nursing expects from the patient, which often tries not to disappoint him. The nursing remain the first information source before internet or the traditional media. The faith in the efficiency of the treatment improves the adhesion and depends on the quality of the relation established with the nursing.
Disclosure of Interest D. Poivret Shareholder of: Pfizer, Lilly,MSD, D. Lebouc: None declared, S. Sfedj: None declared, P. Preiss: None declared, M. Jabri: None declared, C. Raynaud: None declared