Patients Misunderstand Treatments and Progression for Rheumatoid Arthritis

Patients with rheumatoid arthritis (RA) and spondyloarthritis (SpA) did not have appropriate or accurate information about their disease, according to research published in PLOS One.

Researchers from Paris, France interviewed 25 RA patients and 25 SpA patients to assess their understanding, apprehensions, and beliefs about their diseases. The researchers believed it is important to understand patients’ attitudes and beliefs about their diseases in order to improve dialogue between physicians and patients, but also to raise the quality of care offered, to provide a more interactive and dynamic approach to therapy, and to optimize treatment adherence.

Between April and July 2012, researchers performed 2 phases of the study on participants recruited by rheumatologists. In Phase 1, 14 patients were interviewed for about 75 minutes with open ended questions. Phase 2 was the remaining 36 patients who were interviewed for 125 minutes, who were asked open ended and guided questions to procure more specific details about disease onset and progression.

Patients often cited hereditary factors of a familial or individual predisposition for their diseases, and patients with RA were especially more likely to mention an external causes like diet and/ or physical activity. A major fear the patients reported was passing the disease onto their children, which 20 RA and 20 SpA patients mentioned. RA patients cited psychological factors like stress, overwork, anxiety, or distressing life events, and external factors like diet, smoking, alcohol, vaccination, or intense physical activity as causes for disease onset.

Exacerbations were believed to derive from psychological factors like stress and overwork and periods of stress and fatigue. Damp and changeable weather, unhealthy diet, and poor posture also were thought to contribute to exacerbations in the patients that were interviewed. Patients cited protected factors such as relaxation and calmness — the patients generally believed anything that was good for their mind was good for their body, the researchers acknowledged.

When symptoms first appeared, patients believed the course of the disease would leave them handicapped because of other people they knew with the disease. Patients generally underestimated the everyday burdens and only focused on long term outcomes. Initial fears were calmed when treatment was effective and symptoms were reduced, though the fears were rekindled if the patients had an exacerbation.

Patients generally believed treatment could reduce symptoms and eventually return them to a pre- onset state, but after consultations they understood treatments could only slow the symptoms of the disease progression. Patients were also apprehensive about some kind of cost that would come with a treatment that was so effective, which was reinforced by regular clinic visits for checkups.

“Many of the perceptions held by patients about their disease or its treatment could be considered as inappropriate from a medical point of view, such as the belief that diet could influence the risk of exacerbations or that disease-modifying treatments could allow joint structure to be ‘restored’,” the authors concluded. “There is clearly a need for better patient education, and also for perhaps for psychological interventions.”