Patients' perspective of the causes and consequences of rheumatoid arthritis (RA) can conflict with that of healthcare professionals and lead to misunderstanding, difficulties in management and a poorer outcome.
The aim of this study was to describe the variation in how patients conceive the cause of their RA.
An open written question from the Epidemiological Investigation of Rheumatoid Arthritis (EIRA) study, aimed at patients recently diagnosed with RA, was answered by 38 strategically selected patients during 2003 and analysed using the phenomenographic approach.
Two descriptive categories and six concepts emerged: the category 'consequences beyond personal control' comprised not having a clue, being exposed to climatic change, being genetically exposed and unexpected effects of events; the category 'overloaded circumstances' involved work and family-related strain. Consequences beyond personal control implied that the patients could not prevent the disease and expressed their lack of understanding as to why they contracted it. Overloaded circumstances were described as strained situations that were both work and family related and could be influenced by the patient.
The patient's perspective of the cause of their RA includes aspects that complement the current pathogenetic models and should therefore be considered in the management of the disease. When dealing with rheumatic diseases, it is necessary to be aware of the patient's perspectives in order to new management strategies. In addition to epidemiological studies, further studies of patients' own experience are needed in order to achieve a more tailored care model.