Broken data : Conceptualising data in an emerging world

In this article, we introduce and demonstrate the concept-metaphor of broken data. In doing so, we advance critical discussions of digital data by accounting for how data might be in processes of decay, making, repair, re-making and growth, which are inextricable from the ongoing forms of creativity that stem from everyday contingencies and improvisatory human activity. We build and demonstrate our argument through three examples drawn from mundane everyday activity: the incompleteness, inaccuracy and dispersed nature of personal self-tracking data; the data cleaning and repair processes of Big Data analysis and how data can turn into noise and vice versa when they are transduced into sound within practices of music production and sound art. This, we argue is a necessary step for considering the meaning and implications of data as it is increasingly mobilised in ways that impact society and our everyday worlds.Peer reviewe

TNF inhibitors and extraarticular RA Personal non-commercial use only

ABSTRACT. Objective. The aims of this study were to evaluate whether treatment with tumor necrosis factor (TNF) inhibitors in patients with rheumatoid arthritis (RA) affects the risk of developing severe extraarticular rheumatoid arthritis (ExRA) manifestations and to investigate potential predictors for developing ExRA. Methods. A dynamic community-based cohort of patients with RA was studied (n = 1977). Clinical records were reviewed and cases of severe ExRA were identified. Information on exposure to TNF inhibitors was obtained from a regional register. Exposure to TNF inhibitors was analyzed in a time-dependent fashion and the incidence of severe ExRA in exposed patients was compared with the incidence in unexposed patients. Cox regression models were used to assess potential predictors of severe ExRA. Results. During treatment with TNF inhibitors, there were 17 patients with new onset of severe ExRA in 2400 person-years at risk (PY; 0.71/100 PY, 95% CI 0.41-1.13) compared with 104 in 15,599 PY (0.67/100 PY, 95% CI 0.54-0.81) in patients without TNF inhibitors. This corresponded to an incidence rate ratio of 1.06 (95% CI 0.60-1.78). The age-and sex-adjusted HR for ExRA in anti-TNF-treated patients was 1.21 (95% CI 1.02-1.43), with similar findings in models adjusted for time-dependent Health Assessment Questionnaire and propensity for anti-TNF treatment. Male sex, positive rheumatoid factor (RF), long disease duration, and greater disability were predictors for ExRA. Conclusion. This study suggests that patients treated with TNF inhibitors are at a slightly increased risk of developing severe ExRA. RF-positive patients with disabling disease of long duration were more likely to develop sever

Validity of polymyalgia rheumatica diagnoses and classification criteria in primary health care

Objectives: PMR is an inflammatory disease with prominent morning stiffness and muscular tenderness, usually diagnosed in primary health care (PHC). The objectives were to examine the validity of PMR diagnoses in PHC and to validate the use of classification criteria for PMR.Methods: Medical records for patients with a registered PMR diagnosis at two PHC facilities were reviewed. Patients were classified according to several sets of criteria. An independent review, with assessment of the PMR diagnosis, was performed by an experienced rheumatologist.Results: Of 188 patients, the PMR diagnosis was in agreement with the independent review in 60% overall, in 84% of those fulfilling a modified version of the ACR/EULAR classification criteria and in 52% of those who did not. The corresponding proportions for the Bird criteria were 66 and 31%, and for the Healey criteria 74 and 42%. In 74% of the medical records, documentation on morning stiffness was missing. Rheumatoid factor was tested in 22% and anti-CCP antibodies in 15%.Conclusion: In this study of patients with PMR diagnosed in PHC, the diagnosis was supported by the independent review in 60% of the patients. Documentation on morning stiffness and testing for autoantibodies were limited. A modified version of the ACR/EULAR criteria can be used to identify patients with a valid PMR diagnosis in retrospective surveys but does not capture all PMR patients. The modified ACR/EULAR criteria may be more stringent than some of the older criteria sets

Secular trends of sustained remission in rheumatoid arthritis, a nationwide study in Sweden

OBJECTIVES: The aim of this study of patients with RA in Sweden was to investigate secular trends in achieving sustained remission (SR), i.e. DAS28 <2.6 on at least two consecutive occasions and lasting for at least 6 months. METHODS: All adult RA patients registered in the Swedish Rheumatology Quality register through 2012, with at least three registered visits were eligible, a total of 29 084 patients. Year of symptom onset ranged from 1955, but for parts of the analysis only patients with symptom onset between 1994 and 2009 were studied. In total, 95% of patients fulfilled the ACR 1987 classification criteria for RA. Odds of reaching SR for each decade compared with the one before were calculated with logistic regression and individual years of symptom onset were compared with life table analysis. RESULTS: Of patients with symptom onset in the 1980s, 1990s and 2000s, 35.0, 43.0 and 45.6% reached SR, respectively (P < 0.001 for each increment), and the odds of SR were higher in every decade compared with the one before. The hazard ratio for reaching SR was 1.15 (95% CI 1.14, 1.15) for each year from 1994 to 2009 compared with the year before. Five years after symptom onset in 2009, 45.3% of patients had reached SR compared with 15.9% in 1999. CONCLUSION: There is a clear secular trend towards increased incidence of SR in patients with RA in Sweden. This trend most likely reflects earlier diagnosis and treatment start, and adherence to national and international guidelines recommending the treat to target approach

Total cost and cost predictors in systemic lupus erythematosus - 8-years follow-up of a Swedish inception cohort.

To study the annual direct and indirect costs in systemic lupus erythematosus (SLE) and how age, disease manifestations, disease activity, and organ damage influence total costs and predicted costs for SLE

High Disease Activity over Time and Persistent Inflammation Are Associated with Increased Risk of Cardiovascular Disease in Patients with Early Rheumatoid Arthritis

Background/Purpose:Rheumatoid arthritis (RA) is associated with an increased rate of cardiovascular (CV) disease. Systemic inflammation has been implicated as a key factor behind CV comorbidity in RA. The objective of this study was to investigate the impact of disease activity and inflammation over the first two years on the risk of subsequent CV events in patients with early RA.Methods:An inception cohort of patients with early RA (symptom duration Results:A total of 207 patients with early RA (70 % women, mean age 62 years) were followed from the 24-month visit to the first CV event, migration from the region, death or Dec 31, 2011. CV events occurred in 54 patients during the follow-up. A high disease activity over the first two years (defined as AUC for DAS28 above the median) was associated with a significantly increased risk of CV events (age-sex adjusted hazard ratio (HR) 2.03; 95 % confidence interval (CI) 1.15-3.60). In separate analyses, it was demonstrated that patients with CRP at two years within the highest quartile (>11 mg/l) had a significantly higher risk of CV events compared to those with lower CRP values (age-sex adjusted HR 1.82; 95 % CI 1.04-3.17). Results were similar in models adjusted for smoking, hypertension and diabetes in addition to age and sex (multivariate adjusted HRs for DAS28-AUC above the median: 2.05 (95% CI 1.13-3.73); for CRP>11 mg/l: 1.90 (95% CI 1.06-3.42)).Conclusion:A high disease activity during the first two years after RA diagnosis and a high CRP at the two-year follow-up were both associated with a doubled risk of CV events. These findings suggest that patients with persistently active RA are at particularly increased risk, and highlight the importance of disease control for CV prevention in patients with early RA

Prevalence of sustained remission in rheumatoid arthritis: impact of criteria sets and disease duration, a Nationwide Study in Sweden

Objectives The aims of this national study in Sweden of patients with RA were to: examine the prevalence of sustained remission (SR), that is, remission lasting for at least 6 months; compare the prevalence of SR in patients with early RA and established RA; study the timing of onset of and time spent in SR; and study possible predictors of SR. Methods Adult patients with RA included in the Swedish Rheumatology Quality registry were studied. The registry was searched for patients fulfilling remission criteria: DAS28-ESR, Clinical Disease Activity Index (CDAI), Simplified Disease Activity Index (SDAI) and ACR/EULAR remission for at least 6 months. Early RA was defined as symptom duration ⩽6 months at inclusion in the Swedish Rheumatology Quality. Results Of 29 084 patients, 12 193 (41.9%) reached DAS28 SR at some time point during follow-up compared with 6445 (22.2%), 6199 (21.3%) and 5087 (17.5%) for CDAI, SDAI and ACR/EULAR SR, respectively. SR was more common in early RA (P < 0.001). The median time from symptom onset to SR was 1.9, 2.4, 2.4 and 2.5 years according to DAS28, CDAI, SDAI and ACR/EULAR criteria, respectively. Lower age, male sex and milder disease characteristics were associated with SR. Conclusion The majority of patients in this nationwide study never reached SR. Patients with early RA are more likely to reach SR than patients with established RA

Malignancies In Giant Cell Arteritis : A Population-Based Cohort Study

OBJECTIVE: To investigate the risk of cancer in patients with biopsy-proven giant cell arteritis (GCA) from a defined population in southern Sweden.METHODS: The study cohort consisted of 830 patients (mean age at GCA diagnosis was 76.3 years, 74 % women) diagnosed with biopsy-proven GCA between 1997 and 2010. Temporal artery biopsy results were retrieved from a regional database and reviewed to ascertain GCA diagnosis. The cohort was linked to the Swedish Cancer Registry. The patients were followed from GCA diagnosis until death or December 31, 2013. Incident malignancies registered after GCA diagnosis were studied. Based on data on the first malignancy in each organ system, age- and sex standardized incidence ratios (SIR) with 95 % confidence intervals (CI) were calculated compared to the background population.RESULTS: 107 patients (13%) were diagnosed with a total of 118 new malignancies after the onset of GCA. The overall risk for cancer after the GCA diagnosis was not increased (SIR 0.98; 95% CI 0.81 - 1.17). However, there was an increased risk for myeloid leukemia (2.31; 95% CI 1.06 - 4.39) and a reduced risk for breast cancer (0.33; 95% CI 0.12 - 0.72) and upper gastrointestinal tract cancer (0.16; 95% 0.004- 0.91). Rates of other site-specific cancers were not different from expected.CONCLUSION: In this Swedish population-based cohort of GCA, the overall risk for cancer was not increased compared to the background population. However, there was an increased risk for leukemia and a decreased risk for breast and upper gastrointestinal tract cancer

Abatacept in rheumatoid arthritis : Survival on drug, clinical outcomes, and their predictors - Data from a large national quality register

Background: There are limited data regarding efficacy of abatacept treatment for rheumatoid arthritis (RA) outside clinical trials. Quality registers have been useful for observational studies on tumor necrosis factor inhibition in clinical practice. The aim of this study was to investigate clinical efficacy and tolerability of abatacept in RA, using a national register. Methods: RA patients that started abatacept between 2006 and 2017 and were included in the Swedish Rheumatology Quality register (N = 2716) were investigated. Survival on drug was estimated using Kaplan-Meier analysis. The European League Against Rheumatism (EULAR) good response and Health Assessment Questionnaire (HAQ) response (improvement of ≥ 0.3) rates (LUNDEX corrected for drug survival) at 6 and at 12 months were assessed. Predictors of discontinuation were investigated by Cox regression analyses, and predictors of clinical response by logistic regression. Significance-based backward stepwise selection of variables was used for the final multivariate models. Results: There was a significant difference in drug survival by previous biologic disease-modifying antirheumatic drug (bDMARD) exposure (p < 0.001), with longer survival in bionaïve patients. Men (hazard ratio (HR) 0.86, 95% confidence interval (CI) 0.74-0.98) and methotrexate users (HR 0.85, 95% CI 0.76-0.95) were less likely to discontinue abatacept, whereas a high pain score predicted discontinuation (HR 1.14 per standard deviation, 95% CI 1.07-1.20). The absence of previous bDMARD exposure, male sex, and a low HAQ score were independently associated with LUNDEX-corrected EULAR good response. The absence of previous bDMARD exposure also predicted LUNDEX-corrected HAQ response. Conclusions: In this population-based study of RA, bDMARD naïve patients and male patients were more likely to remain on abatacept with a major clinical response