Background Safety and adherence to DMARDs are critical for patients with rheumatoid arthritis (RA) or spondyloarthritis (SpA). Few digital tools exist to help patients on these issues.
Objectives We aimed to decipher the mechanisms of patients' decisions and practices with their DMARDs to develop an educational smartphone application (SP App).
Methods An ethnographic study was designed by 3 rheumatologists, 1 methodologist, patient associations and by 2 anthropologists who conducted the interviews. The study involved 21 patients (enough to reach saturation), recruited by diversity of clinical and sociological profiles. The panel included 16 women and 5 men, median age 46 years-old (extremes 26–70), 12 with RA and 9 with SpA (median disease duration 13 years, extremes 2–38). Nine patients were treated by biologic DMARDs monotherapy, 7 by conventional DMARDs monotherapy and 5 by bDMARD-cDMARD combotherapy. Interviews were conducted using in-depth semi directive and biographic methods. The interview guide was constructed around 3 fields: 1 the organization of the patients' everyday life with their disease, 2 treatment practices, 3 the impact of arthritis on their social and professional activities and relationships. Interviews were recorded and transcribed for analysis.
Results Patients play an active role in the management of their disease. They have to learn to live with it in order to control its impact and course. This learning progressively occurs throughout a non-linear 4-stages career: 1) from 1st symptoms to diagnosis, 2) search for the right treatment and the right dosage, 3) stabilization of the disease and the treatment, 4) dealing with a complication or an unexpected event. Back and forth between stages 2, 3 and 4 are frequent.
This learning implies a partnership-based doctor-patient relationship, and the development of specific skills around safety: dealing with health care system (i.e. knowing which healthcare professionals they need), dealing with information (i.e. knowing how to identify relevant sources). Patients do lots of experiments (changing their DMARD dosage on their own initiative, trying alternative medicine or food exclusions...) and ritualizing their DMARDs administration. Such rituals represent a reflexive moment for the patients dedicated to themselves and their disease.
During the stage of stabilized disease and treatment, rituals tend to improve observance but also increase safety problems because of habits, over-confidence, and forgetting of risky situations. Patients renew interest about safety concerns in case of an unexpected complication.
Conclusions Starting from the patients' point of view, this ethnographic study emphasizes a tension between observance and safety. Practices by which patients appropriate their treatment create habits that improve observance but also increase safety problems. It seems necessary to support the patients in updating their safety skills. A SP App could contribute to this goal only if its use finds its place in the patients' ritual.
Acknowledgements Grant: French Society of Rheumatology with institutional funding by Biogen, Nordic Pharma, Roche
Disclosure of Interest None declared
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