Systematic Review and Appraisal of the Cross-Cultural Validity of Functional Status Assessment Measures in Rheumatoid Arthritis.

OBJECTIVE: We conducted a systematic review and appraisal of the cross-cultural adaptation and cross-cultural validity of the Health Assessment Questionnaire (HAQ) and its derivatives, and of the more recent Patient-Reported Outcomes Measurement Information System (PROMIS) functional status assessment measures (FSAMs) in rheumatoid arthritis. METHODS: Four electronic medical databases were searched from inception until April 4, 2018 according to the Consensus-Based Standards for the Selection of Health Measurement Instruments (COSMIN) group search strategy. Included studies were evaluated using the COSMIN tool for cross-cultural validity and were scored as excellent, good, fair, or poor. RESULTS: Of 58 articles identified by our search strategy and 3 by manual search, 39 were included: 29 described the translation, cultural adaptation, or cross-cultural validity of the HAQ disability index, 8 other HAQ derivatives, and 2 PROMIS measures, representing 22 languages. Of the 39 articles reviewed, 3 examined the cross-cultural validity of translated versions. These studies were rated as follows: 2 as excellent, 3 good, 13 fair, and 21 poor. Two studies examining cross-cultural validity noted differential item functioning (DIF) between Dutch and US populations for the HAQ-II and PROMIS measures, and a third study found DIF between Turkish and UK populations on the HAQ, indicating cultural differences in questionnaire response. CONCLUSION: This review highlights a paucity of data on the cross-cultural validity of FSAMs and the mostly poor- or fair-quality methods by which they were translated and adapted, which needs to be considered when using these measures for multinational clinical trials and for day-to-day use in clinical practice.

Encounters with Rheumatologists in a Publicly Funded Canadian Healthcare System: A Population-based Study.

OBJECTIVE: To quantify population-level and practice-level encounters with rheumatologists over time. METHODS: We conducted a population-based study from 2000 to 2015 in Ontario, Canada, where all residents are covered by a single-payer healthcare system. Annual total number of unique patients seen by rheumatologists, the number of new patients seen, and total number of encounters with rheumatologists were identified. RESULTS: From 2000 to 2015, the percentage of the population seen by rheumatologists was constant over time (2.7%). During this time, Ontario had a stable supply of rheumatologists (0.8 full-time equivalents/75,000). From 2000 to 2015, the number of annual rheumatology encounters increased from 561,452 to 786,061, but the adjusted encounter rates remained stable over time (at 62 encounters per 1000 population). New patient assessment rates declined over time from 10 new outpatient assessments per 1000 in 2000 to 6 per 1000 in 2015. The crude volume of new patients seen annually decreased and an increasing proportion of rheumatology encounters were with established patients. We observed a shift in patient case mix over time, with more assessments for systemic inflammatory conditions. Rheumatologists' practice volumes, practice sizes, and the annual number of days providing clinical care decreased over time. CONCLUSION: Over a 15-year period, the annual percentage of the population seen by a rheumatologist remained constant and the volume of new patients decreased, while followup patient encounters increased. Patient encounters per rheumatologist decreased over time. Our findings provide novel information for rheumatology workforce planning. Factors affecting clinical activity warrant further research.

2019 American College of Rheumatology Recommended Patient-Reported Functional Status Assessment Measures in Rheumatoid Arthritis.

OBJECTIVE: To develop American College of Rheumatology (ACR) recommendations for patient-reported Functional Status Assessment Measures (FSAMs) for use in routine clinical practice in patients with rheumatoid arthritis (RA). METHODS: We convened a workgroup to conduct a systematic review of published literature through March 16, 2017 and abstract FSAM properties. Based upon initial search results and clinical input, we focused on the following FSAMs appropriate for routine clinical use: the Health Assessment Questionnaire (HAQ) and derived measures and the Patient-Reported Outcomes Measurement Information System (PROMIS) tool. We used the Consensus-Based Standards for the Selection of Health Measurement Instruments (COSMIN) 4-point scoring method to evaluate each FSAM, allowing for overall level of evidence assessment. We identified FSAMs fulfilling a predefined minimum standard and, through a modified Delphi process, selected preferred FSAMs for regular use in most clinic settings. RESULTS: The search identified 11,835 articles, of which 56 were included in the review. Descriptions of the measures, properties, study quality, level of evidence, and feasibility were abstracted and scored. Following a modified Delphi process, 7 measures fulfilled the minimum standard for regular use in most clinic settings, and 3 measures were recommended: the PROMIS physical function 10-item short form (PROMIS PF10a), the HAQ-II, and the Multidimensional HAQ. CONCLUSION: This work establishes ACR recommendations for preferred RA FSAMs for regular use in most clinic settings. These results will inform clinical practice and can support future ACR quality measure development as well as highlight ongoing research needs.

Planning for the Rheumatologist Workforce: Factors Associated With Work Hours and Volumes.

OBJECTIVE: The aim of this study was to evaluate factors associated with rheumatologists' clinical work hours and patient volumes based on a national workforce survey in rheumatology. METHODS: Adult rheumatologists who participated in a 2015 workforce survey were included (n = 255). Univariate analysis evaluated the relationship between demographics (sex, age, academic vs. community practice, billing fee for service vs. other plan, years in practice, retirement plans) and workload (total hours and number of ½-day clinics per week) or patient volumes (number of new and follow-up consults per week). Multiple linear regression models were used to evaluate the relationship between practice type, sex, age, and working hours or clinical volumes. RESULTS: Male rheumatologists had more ½-day clinics (p = 0.05) and saw more new patients per week (p = 0.001) compared with females. Community rheumatologists had more ½-day clinics and new and follow-up visits per week (all p < 0.01). Fee-for-service rheumatologists reported more ½-day clinics per week (p < 0.001) and follow-ups (p = 0.04). Workload did not vary by age, years in practice, or retirement plans. In multivariate analysis, community practice remained independently associated with higher patient volumes and more clinics per week. Female rheumatologists reported fewer clinics and fewer follow-up patients per week than males, but this did not affect the duration of working hours or new consultations. Age was not associated with work volumes or hours. CONCLUSIONS: Practice type and rheumatologist sex should be considered when evaluating rheumatologist workforce needs, as the proportion of female rheumatologists has increased over time and alternative billing practices have been introduced in many centers.

Stand Up and Be Counted: Measuring and Mapping the Rheumatology Workforce in Canada.

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.

Does socioeconomic status affect outcomes in early inflammatory arthritis? Data from a canadian multisite suspected rheumatoid arthritis inception cohort.

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.

An administrative data validation study of the accuracy of algorithms for identifying rheumatoid arthritis: the influence of the reference standard on algorithm performance.

BACKGROUND: We have previously validated administrative data algorithms to identify patients with rheumatoid arthritis (RA) using rheumatology clinic records as the reference standard. Here we reassessed the accuracy of the algorithms using primary care records as the reference standard. METHODS: We performed a retrospective chart abstraction study using a random sample of 7500 adult patients under the care of 83 family physicians contributing to the Electronic Medical Record Administrative data Linked Database (EMRALD) in Ontario, Canada. Using physician-reported diagnoses as the reference standard, we computed and compared the sensitivity, specificity, and predictive values for over 100 administrative data algorithms for RA case ascertainment. RESULTS: We identified 69 patients with RA for a lifetime RA prevalence of 0.9%. All algorithms had excellent specificity (>97%). However, sensitivity varied (75-90%) among physician billing algorithms. Despite the low prevalence of RA, most algorithms had adequate positive predictive value (PPV; 51-83%). The algorithm of "[1 hospitalization RA diagnosis code] or [3 physician RA diagnosis codes with ≥1 by a specialist over 2 years]" had a sensitivity of 78% (95% CI 69-88), specificity of 100% (95% CI 100-100), PPV of 78% (95% CI 69-88) and NPV of 100% (95% CI 100-100). CONCLUSIONS: Administrative data algorithms for detecting RA patients achieved a high degree of accuracy amongst the general population. However, results varied slightly from our previous report, which can be attributed to differences in the reference standards with respect to disease prevalence, spectrum of disease, and type of comparator group.

Access to rheumatologists among patients with newly diagnosed rheumatoid arthritis in a Canadian universal public healthcare system.

OBJECTIVES: Our objective was to estimate the percentage of patients with incident rheumatoid arthritis (RA) who were seen by a rheumatologist within 3, 6 and 12 months of suspected diagnosis by a family physician, and assess what factors may influence the time frame with which patients are seen. SETTING: Ontario, Canada. PARTICIPANTS: Over 2000-2009, we studied patients with incident RA who were initially diagnosed by a family physician. PRIMARY AND SECONDARY OUTCOME MEASURES: We assessed secular trends in rheumatology encounters and differences between patients who received versus did not receive rheumatology care. We performed hierarchical logistic regression analyses to determine whether receipt of rheumatology care was associated with patient, primary care physician and geographical factors. RESULTS: Among 19 760 patients with incident RA, 59%, 75% and 84% of patients were seen by a rheumatologist within 3, 6 and 12 months, respectively. The prevalence of initial consultations within 3 months did not increase over time; however, access within 6 and 12 months increased over time. Factors positively associated with timely consultations included higher regional rheumatology supply (adjusted OR (aOR) 1.35 (95% CI 1.13 to 1.60)) and higher patient socioeconomic status (aOR 1.18 (95% CI 1.07 to 1.30)). Conversely, factors inversely associated with timely consultations included remote patient residence (aOR 0.51 (95% CI 0.41 to 0.64)) and male family physicians (aOR 0.88 (95% CI 0.81 to 0.95)). CONCLUSIONS: Increasing access to rheumatologists within 6 and 12 months occurred over time; however, consultations within 3 months did not change over time. Measures of poor access (such as proximity to and density of rheumatologists) were negatively associated with timely consultations. Additional factors that contributed to disparities in access included patient socioeconomic status and physician sex.

Accuracy of Canadian health administrative databases in identifying patients with rheumatoid arthritis: a validation study using the medical records of rheumatologists.

OBJECTIVE: Health administrative data can be a valuable tool for disease surveillance and research. Few studies have rigorously evaluated the accuracy of administrative databases for identifying rheumatoid arthritis (RA) patients. Our aim was to validate administrative data algorithms to identify RA patients in Ontario, Canada. METHODS: We performed a retrospective review of a random sample of 450 patients from 18 rheumatology clinics. Using rheumatologist-reported diagnosis as the reference standard, we tested and validated different combinations of physician billing, hospitalization, and pharmacy data. RESULTS: One hundred forty-nine rheumatology patients were classified as having RA and 301 were classified as not having RA based on our reference standard definition (study RA prevalence 33%). Overall, algorithms that included physician billings had excellent sensitivity (range 94-100%). Specificity and positive predictive value (PPV) were modest to excellent and increased when algorithms included multiple physician claims or specialist claims. The addition of RA medications did not significantly improve algorithm performance. The algorithm of "(1 hospitalization RA code ever) OR (3 physician RA diagnosis codes [claims] with ≥1 by a specialist in a 2-year period)" had a sensitivity of 97%, specificity of 85%, PPV of 76%, and negative predictive value of 98%. Most RA patients (84%) had an RA diagnosis code present in the administrative data within ±1 year of a rheumatologist's documented diagnosis date. CONCLUSION: We demonstrated that administrative data can be used to identify RA patients with a high degree of accuracy. RA diagnosis date and disease duration are fairly well estimated from administrative data in jurisdictions of universal health care insurance.

The rising burden of rheumatoid arthritis surpasses rheumatology supply in Ontario.

OBJECTIVES: Accurate data on the burden of rheumatoid arthritis (RA) are scarce, but critical in helping health care providers and decision makers to optimize clinical and public health strategies for disease management. We quantified the burden of RA in Ontario from 1996 to 2010 by age, sex and health planning region. METHODS: We used the Ontario Rheumatoid Arthritis administrative Database (ORAD), a validated population-based cohort of all Ontarians with RA, to estimate the crude prevalence and incidence of RA among men and women, and by age group from 1996 to 2010. Burden by area of patient residence and rheumatology supply also were determined. RESULTS: The number of RA patients increased over time, from 42,734 Ontarians (0.5%) in 1996 to 97,499 (0.9%) in 2010. On average 5,830 new RA patients were diagnosed each year. In 2010, the burden was higher among females (1.3%) than males (0.5%) and increased with age, with almost half of all RA patients aged 65 years and older. The burden was higher in northern communities (1.0%) than in southern urban areas (0.7%). During the study period, the number of rheumatologists practicing in Ontario remained unchanged (approximately 160). CONCLUSION: Over a 15-year period, the number of RA patients more than doubled with no concomitant increase in the number of practicing rheumatologists. We observed considerable regional variation in burden, with the highest rates observed in the north. Our findings highlight the need for regional approaches to the planning and delivery of RA care in order to manage the growing burden.

Increasing treatment in early rheumatoid arthritis is not determined by the disease activity score but by physician global assessment: results from the CATCH study.

OBJECTIVE: To determine the factors most strongly associated with an increase in therapy of early rheumatoid arthritis (ERA). METHODS: Data from the Canadian Early Arthritis Cohort (CATCH) were included if the patient had ≥ 2 visits and baseline and 6 months data. A regression analysis was done to determine factors associated with treatment intensification. RESULTS: Of 1145 patients with ERA, 790 met inclusion criteria; mean age was 53.4 years (SD 14.7), mean disease duration 6.1 months (SD 2.8), 75% were female, baseline Disease Activity Score-28 (DAS28) was 4.7 (SD 1.8) and 2.9 (SD 1.8) at 6 months for included patients. Univariate factors for intensifying treatment were physician global assessment (MDGA; OR 7.8 and OR 7.4 at 3 and 6 months, respectively, p < 0.0005), swollen joint count (SJC; OR 4.7 and OR 7.3 at 3 and 6 months, p < 0.0005), and DAS28 (OR 3.0 and OR 4.6 at 3 and 6 months, p < 0.0005). In the regression model only MDGA was strongly associated with treatment intensification (OR 1.5 and OR 1.2 at 3 and 6 months, p < 0.0005); DAS28 was not consistently predictive (OR 1.0, p = 0.987, and OR 1.2, p = 0.023, at 3 and 6 months). DAS28 was the reason for treatment intensification 2.3% of the time, compared to 51.7% for SJC, 49.9% for tender joint count, and 23.8% for MDGA. For the same SJC, larger joint involvement was more likely to influence treatment than small joints at 3 months (OR 1.4, p = 0.027). CONCLUSION: MDGA was strongly associated with an increase in treatment at 3 and 6 months in ERA, whereas DAS28 was not. Physicians rarely stated that DAS28 was the reason for increasing treatment.

Comparison of anti-TNF treatment initiation in rheumatoid arthritis databases demonstrates wide country variability in patient parameters at initiation of anti-TNF therapy.

OBJECTIVE: Characteristics of Canadian RA patients started on anti-tumor necrosis factor (TNF) treatment were compared with 12 other countries. METHODS: Data from the Optimization of HUMIRA trial (OH) were compared with Canadian real world studies [Ontario Biologics Research Initiative (OBRI) and the Real-Life Evaluation of Rheumatoid Arthritis in Canadians Receiving HUMIRA (REACH)], and to data from American, Australian, British, Czech, Danish, Dutch, Finnish, German, Italian, Norwegian, Spanish, and Swedish RA databases. Patient characteristics and temporal trends at initiation of anti-TNF therapy were compared between countries. RESULTS: Baseline Disease Activity Scores (DAS28) varied from 5.3 to 6.6. Lower disease severity was noted in databases from countries with less restrictive anti-TNF coverage: Dutch [based on previous disease-modifying antirheumatic drugs (DMARD) use, DAS28, swollen joint count (SJC), tender joint count (TJC), Health Assessment Questionnaire Disability Index (HAQ-DI), Danish (previous DMARD use, DAS28), Norwegian (DAS28, SJC, TJC, visual analog scale (VAS) of global health), and Swedish (DAS28, SJC, TJC, HAQ-DI)]. RA databases showed lower disease scores than did OH (P < 0.05). The US databases also showed lower disease severity (CORRONA: previous DMARD use, SJC, TJC; National Data Bank for Rheumatic Diseases: HAQ, P < 0.001). The UK and Czech Republic had restrictive coverage and higher mean baseline DAS28 than OH (P < 0.001). Baseline DAS28 in the registries with published data lowered over time (British, Norwegian, Danish, and Swedish) but less for the British (P < 0.001). CONCLUSIONS: These results confirm that regional variation exists between the 13 countries analyzed in the initiation of treatment with anti-TNF agents among RA patients and suggest that in some cases this variation may be increasing. In some countries the mean baseline disease severity declined over time and regional reimbursement policies and differences in physician preferences may be influencing initiation of anti-TNF therapy in RA.