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      Pain, sleep and emotional well-being explain the lack of agreement between physician- and patient-perceived remission in early rheumatoid arthritis

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          Abstract

          Background

          Clinical response and remission are defined in multiple ways and measured with different instruments, resulting in substantial variation of the proportion of patients classified as being in remission. Therefore, the agreement between patient-perceived, physician-perceived remission and clinical response and remission definitions was determined in early rheumatoid arthritis (RA) patients. And secondly, differences in clinical and patient-reported outcomes, in patients in physician-perceived remission, between patients in and not in self-perceived remission were assessed.

          Methods

          In 84 early RA patients, who received methotrexate and glucocorticoids, DAS44, ACR/EULAR Boolean-based remission, EULAR good and ACR70 response were determined after 12 weeks. Agreement between patient-perceived (phrased: “ Would you say that, at this moment, your disease activity is as good as gone?”), physician-perceived remission (based on a visual analogue scale for global disease severity) and clinical response and remission definitions were calculated with the percentage of agreement and with kappa values (which corrects for change). In patients in physician-perceived remission, improvement in clinical and patient-reported outcomes (RAID) were compared between patients in and not in self-perceived remission.

          Results

          Agreement between the assessed outcome measures differed enormously. The agreement between physician-perceived and patient-perceived remission was 64% (kappa 0.25, p < 0.01). Physician-perceived remission had the best agreement with EULAR good response (79%), and patient-perceived remission with EULAR good and ACR70 response (both 69%). Patients not in self-perceived remission improved less on RAID components, especially on pain, sleep and emotional well-being.

          Conclusion

          One-third of the early RA patients disagreed with the physician on being in remission. Those patients had less improvement on RAID components, especially on pain, sleep and emotional well-being. Together with the variability in clinical response and remission definitions, these results highlight the need to increase patient involvement in their own health care decisions.

          Electronic supplementary material

          The online version of this article (10.1186/s41927-018-0024-9) contains supplementary material, which is available to authorized users.

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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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            Factors associated with non-adherence to oral medication for inflammatory bowel disease: a systematic review.

            Adherence is generally associated with improved treatment outcomes. Risk factors for non-adherence must be understood to improve adherence. A systematic review was undertaken to determine which variables were consistently associated with non-adherence to oral medication in inflammatory bowel disease (IBD). The databases EMBASE, Medline, and PsycINFO were searched for titles relating to adherence, medication, and IBD (1980-2008). Primary, quantitative studies were included if they concerned adult patients with IBD, measured adherence to oral medication, and measured characteristics associated with adherence. The resulting 17 papers were independently reviewed by two researchers who also assessed their quality according to pre-defined criteria. The main outcome was the frequency with which demographic, clinical, treatment, and psychosocial variables were found to be statistically significantly associated with non-adherence. Non-adherence rates ranged from 7 to 72%, with most studies reporting that 30-45% of patients were non-adherent. No demographic, clinical, or treatment variables were consistently associated with non-adherence. Psychological distress and patients' beliefs about medications were both related to non-adherence in four out of five studies, and doctor-patient discordance was associated with non-adherence in two out of three studies. This is the largest review of factors associated with non-adherence in IBD. Demographic, clinical, and treatment variables were not consistently associated with non-adherence. Psychological distress, patients' beliefs about medications, and doctor-patient discordance were associated with non-adherence. These findings call into question some of the conclusions of earlier reviews that did not take into account nonsignificant findings. Practical suggestions for gastroenterologists and future research are discussed.
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              Patient-physician discordance in assessments of global disease severity in rheumatoid arthritis.

              To determine the degree of discordance between patient and physician assessment of disease severity in a multiethnic cohort of adults with rheumatoid arthritis (RA), to explore predictors of discordance, and to examine the impact of discordance on the Disease Activity Score in 28 joints (DAS28). Adults with RA (n = 223) and their rheumatologists completed a visual analog scale (VAS) for global disease severity independently. Patient demographics, the 9-item Patient Health Questionnaire (PHQ-9) depression scale score, the Health Assessment Questionnaire score, and the DAS28 were also collected. Logistic regression analyses were used to identify predictors of positive discordance, defined as a patient rating minus physician rating of >25 mm on a 100-mm VAS (considered clinically relevant). DAS28 scores stratified by level of discordance were compared using a paired t-test. Positive discordance was found in 30% of cases, with a mean +/- SD difference of 46 +/- 15. The strongest independent predictor of discordance was a 5-point increase in PHQ-9 score (adjusted odds ratio 1.61, 95% confidence interval 1.02-2.55). Higher swollen joint count and Cantonese/Mandarin language were associated with lower odds of discordance. DAS28 scores were most divergent among subjects with discordance. Nearly one-third of RA patients differed from their physicians to a meaningful degree in assessment of global disease severity. Higher depressive symptoms were associated with discordance. Further investigation of the relationships between mood, disease activity, and discordance may guide interventions to improve care for adults with RA.
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                Author and article information

                Contributors
                +31 20 242 1800 , s.turk@reade.nl
                l.rasch@vumc.nl
                d.v.schaardenburg@reade.nl
                wf.lems@vumc.nl
                m.sanberg@reade.nl
                l.vantuyl@vumc.nl
                m.terwee@vumc.nl
                Journal
                BMC Rheumatol
                BMC Rheumatol
                BMC rheumatology
                BioMed Central (London )
                2520-1026
                26 June 2018
                26 June 2018
                2018
                : 2
                : 16
                Affiliations
                [1 ]Department of Rheumatology, Amsterdam Rheumatology and immunology Center | Reade, PO box 58271, 1040 HG, Amsterdam, The Netherlands
                [2 ]ISNI 0000 0004 0435 165X, GRID grid.16872.3a, Department of Rheumatology, , Amsterdam Rheumatology and immunology Center | VU University Medical Center, ; Amsterdam, Netherlands
                [3 ]ISNI 0000000404654431, GRID grid.5650.6, Department of Rheumatology, , Amsterdam Rheumatology and immunology Center | Academic Medical Center, ; Amsterdam, Netherlands
                [4 ]ISNI 0000 0004 0435 165X, GRID grid.16872.3a, Department of Epidemiology and Biostatistics, , VU University Medical Center, ; Amsterdam, Netherlands
                Author information
                http://orcid.org/0000-0003-1448-0140
                Article
                24
                10.1186/s41927-018-0024-9
                6390551
                30886967
                3c889a01-4d7d-456a-a113-7d6866f0dcf8
                © The Author(s) 2018

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

                History
                : 28 November 2017
                : 24 May 2018
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2018

                rheumatoid arthritis,disease-modifying antirheumatic drugs (dmards),patient reported outcomes,fatigue,physician agreement

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