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Objective.The aim of this study was to develop a patient-centered quality measurement framework to address a predefined vision statement and 7 strategic objectives for rheumatoid arthritis (RA) care that was developed in prior qualitative work with arthritis stakeholders.Methods.One hundred forty-seven RA-related performance measures (PMs) were identified from a systematic review. A candidate list of 26 PMs meeting predefined criteria and addressing the strategic objectives previously defined was then assessed during a 3-round (R) modified Delphi. Seventeen panelists with expertise in RA, quality measurement, and/or lived experience with RA rated each PM on a 1–9 scale based on the items of importance, feasibility, and priority for inclusion in the framework during R1 and R3, with a moderated discussion in R2. PMs with median scores ≥ 7 on all 3 items without disagreement were included in the final set, which then underwent public comment.Results.Twenty-one measures were included in the final framework (15 PMs from the Delphi and 6 published system-level measures on access to care and treatment). The measures included 4 addressing early access to care and timely diagnosis, 12 evidence-based care for RA and related comorbidities, 1 addressing patient participation as an informed partner in care, and 4 on patient outcomes.Conclusion.The proposed framework builds upon existing measures capturing early access to care and treatment in RA and adds important PMs to promote high-quality RA care and outcome measurement. In the next phase, the authors will test the framework in clinical practice in addition to addressing certain areas where no suitable PMs were identified.

Objective.Persistent systemic lupus erythematosus (SLE) disease activity is associated with increased morbidity and mortality. In a multicenter cohort of patients with prevalent SLE, we described persistence, patterns, and predictors of change in disease activity over time.Methods.Based on SLE Disease Activity Index (SLEDAI)-2K scores at cohort entry, patients were classified into 4 groups: low (score < 4; LOW), moderate (4 to < 6; MOD), moderately high (6 to ≤ 10; MHIGH), and very high (> 10; VHIGH). Multivariable linear and longitudinal mixed linear regression models were used to identify predictors of change over time in SLEDAI-2K.Results.There were 2019 participants, with declining followup data over 5 years (1326, 580, 274, 186, and 148 patients, respectively). At cohort entry, mean (± SD) age was 42 (± 17) years, disease duration 11 (± 10) years, and 90% were female. The 4 groups included 44% LOW (n = 891), 20% MOD (n = 400), 22% MHIGH (n = 442), and 14% VHIGH (n = 286); therefore, 36% had clinically important SLE activity. The proportion of patients in the LOW group at entry who moved to a higher activity level varied from 30% (167/557) at 1 year, to 49% (41/83) at 3 years, and 54% (30/56) at 5 years. Among 181 patients with MOD to VHIGH entry activity and 3 years of followup, 116 (64.1%) remained active. In all analyses, only higher SLEDAI-2K at cohort entry remained a significant predictor of higher SLEDAI-2K in subsequent years.Conclusion.Higher SLEDAI-2K at study entry was the single major independent predictor of higher SLEDAI-2K over time, reflecting frequent persistence of active disease, even in patients with longstanding disease. This highlights gaps in the optimal treatment of SLE.

Objective.To characterize the practicing rheumatologist workforce, the Canadian Rheumatology Association (CRA) launched the Stand Up and Be Counted workforce survey in 2015.Methods.The survey was distributed electronically to 695 individuals, of whom 519 were expected to be practicing rheumatologists. Demographic and practice information were elicited. We estimated the number of full-time equivalent rheumatologists per 75,000 population from the median proportion of time devoted to clinical practice multiplied by provincial rheumatologist numbers from the Canadian Medical Association.Results.The response rate was 68% (355/519) of expected practicing rheumatologists (304 were in adult practice, and 51 pediatric). The median age was 50 years, and one-third planned to retire within the next 5–10 years. The majority (81%) were university-affiliated. Rheumatologists spent a median of 70% of their time in clinical practice, holding 6 half-day clinics weekly, with 10 new consultations and 45 followups seen per week. Work characteristics varied by type of rheumatologist (adult or pediatric) and by practice setting (community- or university-based). We estimated between 0 and 0.8 full-time rheumatologists per 75,000 population in each province. This represents a deficit of 1 to 77 full-time rheumatologists per province/territory to meet the CRA recommendation of 1 rheumatologist per 75,000 population, depending on the province/territory.Conclusion.Our results highlight a current shortage of rheumatologists in Canada that may worsen in the next 10 years because one-third of the workforce plans to retire. Efforts to encourage trainees to enter rheumatology and strategies to support retention are critical to address the shortage.

Objective.Anticitrullinated protein antibody (ACPA) is as sensitive as, but more specific than, rheumatoid factor (RF) and is detected earlier in rheumatoid arthritis (RA). Although part of the RA classification criteria, ACPA testing is not routinely paid for/accessible in all jurisdictions. The effect of missing ACPA testing was studied to determine whether failure to perform ACPA testing could cause a care gap in early inflammatory arthritis.Methods.Nearly 2000 patients (n = 1998) recruited to an early inflammatory arthritis cohort were allocated into 3 groups: (1) seropositive (either RF+ or ACPA+), (2) seronegative (RF− and ACPA−), and (3) missing ACPA and RF−. Analyses were adjusted for age, sex, symptom duration, and smoking status if p < 0.1. Disease Activity Score at 28 joints (DAS28) at 3 months was studied, because beyond then, disease activity is expected to determine ongoing treatment.Results.More seropositive patients fulfilled the 2010 American College of Rheumatology/European League Against Rheumatism RA criteria than seronegative patients. Group 3 was slightly older and had a smaller percentage of females, as well as shorter symptom duration and less smoking. At 3 months, group 3 was treated with fewer disease-modifying antirheumatic drugs and methotrexate (p < 0.00002) than groups 1 and 2, but there were no significant differences in DAS28, Health Assessment Questionnaire-Disability Index (HAQ-DI), proportion receiving corticosteroids, or physician’s/patient’s global assessments.Conclusion.There was no care gap in the RF-negative, unknown ACPA group because there were no significant differences in the DAS28, 3-month change in DAS28, or HAQ-DI, despite less treatment. Cost-effectiveness of ensuring ACPA testing availability in suspected RA is unknown because early outcomes did not differ, whether or not ACPA was available.

Objective.To assess the effect of socioeconomic status (SES) on outcomes in patients with early inflammatory arthritis, using data from the Canadian Early Arthritis Cohort (CATCH) study.Methods.In an incident cohort, 2023 patients were recruited, and allocated to low SES or high SES groups based on education and income. Outcomes at baseline and 12 months were analyzed in relation to SES including the 28-joint Disease Activity Score (DAS28), Simplified Disease Activity Index (SDAI), pain, patient’s global assessment scale (PtGA), the Health Assessment Questionnaire–Disability Index (HAQ-DI), and the SF12-v2 Health Survey, using the ANOVA, chi-squared test, and regression analyses.Results.The CATCH population had 43% with high school education or less and 37% in the low-income group (< 50,000 Can$ per annum household income). The low-education group had higher DAS28 at baseline (p = 0.045), becoming nonsignificant at 12 months and lower physical component score on SF12-v2 at baseline (p = 0.022). Patients in the low-income group presented with higher HAQ-DI (p = 0.017), pain (p = 0.035), PtGA (p = 0.004), and SDAI (p = 0.022). Low-income versus high-income groups were associated with an OR above the median for HAQ-DI (1.20; 95% CI 1.00–1.45), PtGA (1.27; 95% CI 1.06–1.53), and SDAI (1.25; 95% CI 1.02–1.52) at baseline. The association with low income persisted at 12 months for HAQ-DI (OR 1.30; 95% CI 1.02–1.67), but not for other variables.Conclusion.Low SES was initially associated with higher disease activity, pain, and PtGA, and poorer function. At 1 year, outcomes were similar to those with high SES, with the exception of HAQ-DI.

Objective.To evaluate the prevalence and predictive factors of sustained remission in an early rheumatoid arthritis (ERA) population. Predictive factors of sustained remission in ERA are unknown. We hypothesized that a short time to remission is an important predictor of sustained clinical remission.Methods.Patients in the Canadian Early Arthritis Cohort were included. Remission was defined by Boolean-based American College of Rheumatology/European League Against Rheumatism clinical trial and clinical practice definitions and Simplified Disease Activity Index (SDAI). Logistic regression analysis identified predictors of sustained remission and influence of time to remission.Results.Of 1840 patients, 633 (34%) achieved clinical trial remission, 759 (41%) clinical practice remission, and 727 (39%) SDAI remission. Over half of those meeting remission criteria achieved sustained remission based on clinical trial (55%), clinical practice (60%), and/or SDAI (58%). Corticosteroid use and lack of initial disease-modifying antirheumatic drug (DMARD) were associated with decreased probability of sustained remission, while initial combination DMARD increased this probability. Female sex, greater pain, and longer time to first remission made sustained remission less likely.Conclusion.Female sex, greater pain, and lack of initial DMARD therapy reduced the probability of sustained remission. A shorter time to remission is related to sustainability and supports striving for early remission.

Objective.Current clinical trial designs for pharmacologic interventions in rheumatoid arthritis (RA) do not reflect the innovations in RA diagnosis, treatment, and care in countries where new drugs are most often used. The objective of this project was to recommend revised entry criteria and other study design features for RA clinical trials.Methods.Recommendations were developed using a modified nominal group consensus method. Canadian Rheumatology Research Consortium (CRRC) members were polled to rank the greatest challenges to clinical trial recruitment in their practices. Initial recommendations were developed by an expert panel of rheumatology trialists and other experts. A scoping study methodology was then used to examine the evidence available to support or refute each initial recommendation. The potential influence of CRRC recommendations on primary outcomes in future trials was examined. Recommendations were finalized using a consensus process.Results.Recommendations for clinical trial inclusion criteria addressed measures of disease activity [Disease Activity Score 28 using erythrocyte sedimentation rate (DAS28-ESR) > 3.2 PLUS ≥ 3 tender joints using 28-joint count (TJC28) PLUS ≥ 3 swollen joint (SJC28) OR C-reactive protein (CRP) or ESR > upper limit of normal PLUS ≥ 3 TJC28 PLUS ≥ 3 SJC28], functional classification, disease classification and duration, and concomitant RA treatments. Additional recommendations regarding study design addressed rescue strategies and longterm extension.Conclusion.There is an urgent need to modify clinical trial inclusion criteria and other study design features to better reflect the current characteristics of people living with RA in the countries where the new drugs will be used.

The Spondyloarthritis Research Consortium of Cananda (SPARCC) is a transdiscliplinary research network of investigators interested in spondyloarthritis. The group has been supported by a new research initiative by The Arthritis Society. SPARCC aims to address the genetic basis of susceptibility of the disease and develop and validate clinical and imaging outcomes to assess disease activity and structural damage over time, the response to therapy, and the clinical burden of illness in terms of quality of life and disability. The first step was to develop a database that would allow ascertainment of phenotype for genetic studies, as well as accurate and detailed longitudinal information for disease expression and outcome studies. This article describes the SPARCC database and outlines difficulties and possible solutions for maintaining such a database.

Objective.Pleuritis is a common manifestation and independent predictor of mortality in systemic lupus erythematosus (SLE). We examined the prevalence of pleuritis and factors associated with pleuritis in a multicenter Canadian SLE cohort.Methods.We studied consecutive adults satisfying the American College of Rheumatology (ACR) classification criteria for SLE who had a completed Systemic Lupus International Collaborating Clinics/ACR Damage Index (SDI) score, at least 1 evaluable extractable nuclear antigen assay, and either a SLE Disease Activity Index (SLEDAI) or a SLE Activity Measure score. Pleuritis was defined as having pleuritis by satisfying the ACR criteria or the SLEDAI. Factors related to pleuritis were examined using univariate and multivariate logistic regression.Results.In our cohort of 876 patients, 91% were women, 65% Caucasian, mean age (± SD) was 46.8 ± 13.5 years, and disease duration at study entry was 12.1 ± 9.9 years; the prevalence of pleuritis was 34% (n = 296). Notably, greater disease duration (p = 0.002), higher SDI score (p ≤ 0.0001), age at SLE diagnosis (p = 0.009), and anti-Sm (p = 0.002) and anti-RNP (p = 0.002) seropositivity were significantly associated with pleuritis. In multivariate analysis with adjustment for disease duration, age at diagnosis, and SDI score, concomitant seropositivity for RNP and Sm were related to a nearly 2-fold greater prevalence of pleuritis (OR 1.98, 95% CI 1.31–2.82).Conclusion.Pleuritis occurred in one-third of this Canadian cohort. Concomitant Sm and RNP seropositivity, greater cumulative damage, longer disease duration, and younger age at SLE disease onset were related to a higher rate of SLE pleural disease.

Objective.To describe disease expression and damage accrual in systemic lupus erythematosus (SLE), and determine the influence of ethnicity and socioeconomic factors on damage accrual in a large multiethnic Canadian cohort.Methods.Adults with SLE were enrolled in a multicenter cohort. Data on sociodemographic factors, diagnostic criteria, disease activity, autoantibodies, treatment, and damage were collected using standardized tools, and results were compared across ethnic groups. We analyzed baseline data, testing for differences in sociodemographic and clinical factors, between the different ethnic groups, in univariate analyses; significant variables from univariate analyses were included in multivariate regression models examining for differences between ethnic groups, related to damage scores.Results.We studied 1416 patients, including 826 Caucasians, 249 Asians, 122 Afro-Caribbeans, and 73 Aboriginals. Although the overall number of American College of Rheumatology criteria in different ethnic groups was similar, there were differences in individual manifestations and autoantibody profiles. Asian and Afro-Caribbean patients had more frequent renal involvement and more exposure to immunosuppressives. Aboriginal patients had high frequencies of antiphospholipid antibodies and high rates of comorbidity, but disease manifestations similar to Caucasians. Asian patients had the youngest age at onset and the lowest damage scores. Aboriginals had the least education and lowest incomes. The final regression model (R2= 0.27) for higher damage score included older age, longer disease duration, low income, prednisone treatment, higher disease activity, and cyclophosphamide treatment.Conclusion.There are differences in lupus phenotypes between ethnic populations. Although ethnicity was not found to be a significant independent predictor of damage accrual, low income was.

Our research group investigated reasons for provision of suboptimal healthcare for persons with rheumatoid arthritis (RA) within the McGill University health network. In light of the recent article by Graydon and Thompson1, and the accompanying editorial by Harrington2, we report some of our preliminary findings. Recent work by Feldman, et al 3 suggested low rates of rheumatology referral for persons with suspected RA in Quebec, so we began with a series of focus group discussions to investigate reasons for this phenomenon. We conducted separate focus groups for major stakeholders (patients, family physicians, rheumatologists, allied healthcare providers, and administrative healthcare decision-makers). We had 3 focus groups for family physicians, with a total of 13 participants (9 men, 4 women). Across the stakeholder groups, commonly emerging themes included the value of communication (between physicians and patients, and between healthcare providers), education (of patients, healthcare providers, and the general community), and adequate … Address reprint requests to Dr. S. Bernatsky, Division of Clinical Epidemiology, Research Institute of the McGill University Health Centre, 687 Pine, Avenue West, V-Building, Montreal, Quebec H3A 1A1, Canada. E-mail: sasha.bernatsky{at}mail.mcgill.ca