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      Fears and Beliefs in Rheumatoid Arthritis and Spondyloarthritis: A Qualitative Study

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          Abstract

          Objectives

          To explore beliefs and apprehensions about disease and its treatment in patients with rheumatoid arthritis and spondyloarthritis.

          Methods

          25 patients with rheumatoid arthritis and 25 with spondyloarthritis participated in semi-structured interviews about their disease and its treatment. The interviews were performed by trained interviewers in participants' homes. The interviews were recorded and the main themes identified by content analysis.

          Results

          Patients differentiated between the underlying cause of the disease, which was most frequently identified as a hereditary or individual predisposition. In patients with rheumatoid arthritis, the most frequently cited triggering factor for disease onset was a psychological factor or life-event, whereas patients with spondyloarthritis tended to focus more on an intrinsic vulnerability to disease. Stress and overexertion were considered important triggering factors for exacerbations, and relaxation techniques were frequently cited strategies to manage exacerbations. The unpredictability of the disease course was a common source of anxiety. Beliefs about the disease and apprehensions about the future tended to evolve over the course of the disease, as did treatment expectations.

          Conclusions

          Patients with rheumatoid arthritis and spondyloarthritis hold a core set of beliefs and apprehensions that reflect their level of information about their disease and are not necessarily appropriate. The physician can initiate discussion of these beliefs in order to dispel misconceptions, align treatment expectations, provide reassurance to the patient and readjust disease management. Such a dialogue would help improve standards of care in these chronic and incapacitating diseases.

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          Most cited references23

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          Finalisation and validation of the rheumatoid arthritis impact of disease score, a patient-derived composite measure of impact of rheumatoid arthritis: a EULAR initiative.

          A patient-derived composite measure of the impact of rheumatoid arthritis (RA), the rheumatoid arthritis impact of disease (RAID) score, takes into account pain, functional capacity, fatigue, physical and emotional wellbeing, quality of sleep and coping. The objectives were to finalise the RAID and examine its psychometric properties. An international multicentre cross-sectional and longitudinal study of consecutive RA patients from 12 European countries was conducted to examine the psychometric properties of the different combinations of instruments that might be included within the RAID combinations scale (numeric rating scales (NRS) or various questionnaires). Construct validity was assessed cross-sectionally by Spearman correlation, reliability by intraclass correlation coefficient (ICC) in 50 stable patients, and sensitivity to change by standardised response means (SRM) in 88 patients whose treatment was intensified. 570 patients (79% women, mean ± SD age 56 ± 13 years, disease duration 12.5 ± 10.3 years, disease activity score (DAS28) 4.1 ± 1.6) participated in the validation study. NRS questions performed as well as longer combinations of questionnaires: the final RAID score is composed of seven NRS questions. The final RAID correlated strongly with patient global (R=0.76) and significantly also with other outcomes (DAS28 R=0.69, short form 36 physical -0.59 and mental -0.55, p<0.0001 for all). Reliability was high (ICC 0.90; 95% CI 0.84 to 0.94) and sensitivity to change was good (SRM 0.98 (0.96 to 1.00) compared with DAS28 SRM 1.06 (1.01 to 1.11)). The RAID score is a patient-derived composite score assessing the seven most important domains of impact of RA. This score is now validated; sensitivity to change should be further examined in larger studies.
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            Diagnosis and management of rheumatoid arthritis.

            Rheumatoid arthritis is a chronic inflammatory disease characterized by uncontrolled proliferation of synovial tissue and a wide array of multisystem comorbidities. Prevalence is estimated to be 0.8 percent worldwide, with women twice as likely to develop the disease as men. Untreated, 20 to 30 percent of persons with rheumatoid arthritis become permanently work-disabled within two to three years of diagnosis. Genetic and environmental factors play a role in pathogenesis. Although laboratory testing and imaging studies can help confirm the diagnosis and track disease progress, rheumatoid arthritis primarily is a clinical diagnosis and no single laboratory test is diagnostic. Complications of rheumatoid arthritis may begin to develop within months of presentation; therefore, early referral to or consultation with a rheumatologist for initiation of treatment with disease-modifying antirheumatic drugs is recommended. Several promising new disease-modifying drugs recently have become available, including leflunomide, tumor necrosis factor inhibitors, and anakinra. Nonsteroidal anti-inflammatory drugs, corticosteroids, and nonpharmacologic modalities also are useful. Patients who do not respond well to a single disease-modifying drug may be candidates for combination therapy. Rheumatoid arthritis is a lifelong disease, although patients can go into remission. Physicians must be aware of common comorbidities. Progression of rheumatoid arthritis is monitored according to American College of Rheumatology criteria based on changes in specific symptoms and laboratory findings. Predictors of poor outcomes in early stages of rheumatoid arthritis include low functional score early in the disease, lower socioeconomic status, early involvement of many joints, high erythrocyte sedimentation rate or C-reactive protein level at disease onset, positive rheumatoid factor, and early radiologic changes.
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              Delays in help seeking at the onset of the symptoms of rheumatoid arthritis: a systematic synthesis of qualitative literature.

              A systematic review of qualitative peer-reviewed publications was conducted to identify drivers of and barriers to help-seeking behaviour in adults with new-onset rheumatoid arthritis (RA). 1058 abstracts were searched to identify relevant publications. 21 relevant publications were identified assessed for quality and subjected to analysis informed by thematic and grounded theory frameworks. Several interacting themes were identified including the early experience of symptoms in relation to disease prototypes, minimising the impact of symptoms, speaking to others, gathering information and seeking alternative treatments, and issues related to accessing health services and attitudes towards healthcare professionals. Many people suggested that they had little knowledge of RA before diagnosis, believing RA to be a mild condition that affected older people. These misperceptions made correct symptom interpretation unlikely. Normalising and ignoring symptoms led people to delay in help-seeking. However, when symptoms impacted on daily activities help was usually sought. Individual interpretations of symptoms are both drivers of and barriers to help seeking. Targeted public health interventions are required to inform symptom interpretation and reduce delays.
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                Author and article information

                Contributors
                Role: Editor
                Journal
                PLoS One
                PLoS ONE
                plos
                plosone
                PLoS ONE
                Public Library of Science (San Francisco, USA )
                1932-6203
                2014
                4 December 2014
                : 9
                : 12
                : e114350
                Affiliations
                [1 ]Sorbonne Universités, UPMC Univ Paris 6, AP-HP, Hôpital Saint-Antoine, Rheumatology Department, Paris, France
                [2 ]INSERM, Sorbonne Universités, UPMC Univ Paris 6, UMR_S 1136, Pierre Louis Institute of Epidemiology and Public Health, Department of Social Epidemiology, Paris, France
                [3 ]AP-HP, Hôpital Pitié-Salpétrière, Rheumatology Department, Paris, France
                [4 ]AP-HP, Hôpital Cochin, Clinical Psychology Department, Paris, France
                [5 ]Independent Researcher, Paris, France
                [6 ]UCB Laboratoires, Colombes, France
                [7 ]Arthritis Fondation Courtin, Neuilly-sur-Seine, France
                [8 ]CHU La Cavale Blanche, Rheumatology Department, Brest, France
                University of Birmingham, United Kingdom
                Author notes

                Competing Interests: PC: Consultancy fees from UCB Pharma TdC: UCB Pharma Employee JMJ: UCB Pharma Employee and Shareholder AS: Consultancy/speaker fees from UCB Pharma. The authors confirm that this does not alter their adherence to PLOS ONE policies on sharing data and materials.

                Conceived and designed the experiments: FB PC CH FM-P MP TDC CD FR-M J-MJ AS. Performed the experiments: CD J-MJ TDC. Analyzed the data: FB PC CH FM-P MP TDC CD FR-M J-MJ AS. Contributed reagents/materials/analysis tools: FB PC CH FM-P MP TDC CD FR-M J-MJ AS. Wrote the paper: FB PC CH FM-P MP TDC CD FR-M J-MJ AS.

                Article
                PONE-D-14-09977
                10.1371/journal.pone.0114350
                4256228
                25474157
                7931f3dd-2271-41f4-acee-ade2e8c42bde
                Copyright @ 2014

                This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

                History
                : 21 March 2014
                : 6 November 2014
                Page count
                Pages: 16
                Funding
                The work was jointly funded and supported by Arthritis Fundation, a French charitable organisation dedicated to the promotion and support of biomedical research on severe joint diseases, and UCB Pharma. The funder provided support in the form of salaries for authors TDC, CD, FR-M and JMJ, but did not have any additional role in the study design, data collection and analysis, decision to publish, or preparation of the manuscript. The specific roles of these authors are articulated in the ‘author contributions’ section.
                Categories
                Research Article
                Biology and Life Sciences
                Immunology
                Clinical Immunology
                Autoimmune Diseases
                Ankylosing Spondylitis
                Rheumatoid Arthritis
                Medicine and Health Sciences
                Clinical Medicine
                Health Care
                Communication in Health Care
                Patients
                Quality of Care
                Rheumatology
                Arthritis

                Uncategorized
                Uncategorized

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