Background The impact of rheumatoid arthritis (RA) on the lives of people is a constant in the studies explored. However, research shows the lack of impact that this has on clinical consultations, despite the influence it may have on the attitude of the person with RA towards treatment adherence. In the Spanish context, except for the study by Devillard & Otegui (1991), the experience of living with RA has scarcely been addressed.
Objectives To explore the experience of living with RA in Spain.
Methods In-depth interviews were conducted with a group of patients from two hospitals in the two main Spanish cities: Madrid and Barcelona. The interviews were conducted between April 2014 and February 2015. Thematic analysis was done, identifying the main themes and subthemes and organizing data in a coding framework that allows their interpretation
Results Patients with disease activity moderate or severe (DAS28 >3.2), and already treated with DMARD, were aged 40–79, 15 were women and 4 men. Three main categories emerged from the discourses. (Table 1)
Conclusions RA patients know well what is it like to get up in the morning, tired, stiff, sore and having to rethink their day. Prioritization and planning activities are key to the organization of the activity and rest. Families and external aid, in case they can afford it, are the most common supports on which the requested supports pivot.
The constant development of new therapeutic strategies and outbreaks of the disease determine the use of an important therapeutic arsenal, with unpleasant side effects, and that should be administered in a hospital setting. This need to rely on medical treatment also extends to doctors, as part of the therapeutic strategy. Nurses are absent from the speeches of our participants
RA patients in our study feel they are mainly on their own to cope with their disease. The new therapeutic strategies have improved the symptoms' control, but they feel they need more than drugs to cope with their daily life. Contrary to the variety of professionals, institutions and organizations that try to empower patients to self manage their disease in other countries, the Spanish attention pivot mainly in rheumatologists.
Devillard, Marie Jose; Otegui, Rosario; García, Pilar. La voz callada. Aproximaciones antropolόgico-social al enfermo de artritis reumatoide. Madrid: Comunidad de Madrid. Consejería de Salud; 1991.
Disclosure of Interest None declared