Testing population-based performance measures identifies gaps in juvenile idiopathic arthritis (JIA) care

BackgroundThe study evaluates Performance Measures (PMs) for Juvenile Idiopathic Arthritis (JIA): The percentage of patients with new onset JIA with at least one visit to a pediatric rheumatologist in the first year of diagnosis (PM1); and the percentage of patients with JIA under rheumatology care seen in follow-up at least once per year (PM2).MethodsValidated JIA case ascertainment algorithms were used to identify cases from provincial health administrative databases in Manitoba, Canada in patients < 16 years between 01/04/2005 and 31/03/2015.  Using a 3-year washout period, the percentage of incident JIA patients with ≥1 visit to a pediatric rheumatologist in the first year was calculated. For each fiscal year, the proportion of patients expected to be seen in follow-up who had a visit were calculated (PM2). The proportion of patients with gaps in care of > 12 and > 14 months between consecutive visits were also calculated.ResultsOne hundred ninety-four incident JIA cases were diagnosed between 01/04/2008 and 03/31/2015. The median age at diagnosis was 9.1 years and 71% were female. PM1: Across the years, 51–81% of JIA cases saw a pediatric rheumatologist within 1 year.  Between 58 and 78% of patients were seen in yearly follow-up. Gaps > 12, and > 14, months were observed once during follow-up in 52, and 34%, of cases, and ≥ twice in 11, and 5%, respectively.ConclusionsSuboptimal access to pediatric rheumatologist care was observed which could lead to diagnostic and treatment delays and lack of consistent follow-up, potentially negatively impacting patient outcomes.

Related papers:

title: Prevalence and incidence of juvenile idiopathic arthritis: a systematic review.
abstract: To conduct a systematic literature review on incidence and prevalence of juvenile idiopathic arthritis and to estimate these figures in Europe for 2010.



Articles on incidence or prevalence of juvenile idiopathic arthritis were searched in Medline. Pooled incidence and prevalence were calculated overall, by gender, age, classification and arthritis categories. We used the available age and gender pooled rates to standardize the incidence and prevalence on the 2010 European population and estimate the number of cases in Europe in 2010.



Forty-three articles (33 on incidence, 29 on prevalence) were included. Incidence rates varied from 1.6 to 23 and prevalence from 3.8 to 400/100,000. Pooled incidence and prevalence were higher for girls (10.0 [9.4-10.7] and 19.4 [18.3-20.6]/100,000) than boys (5.7 [5.3-6.2] and 11.0 [10.2-11.9]/100,000). Oligoarthritis was the most frequent form (pooled incidence rate 3.7 [3.5-3.9] and prevalence 16.8 [15.9-17.7]/100,000). The direct standardized incidence rate was 8.2 [7.5-9.0] and prevalence 70.2 [62.9-78.1]/100,000. In Europe in 2010, the estimated number of incident cases was 6896 [5481-8578] and 59,175 [44,256-76,983] prevalent cases.



Incidence and prevalence varied greatly among published reports of juvenile idiopathic arthritis, which may be explained by methodological issues, classification used, and time. Estimating the number of affected children can be useful, especially with the new treatment possibilities.

title: Time to diagnosis in juvenile idiopathic arthritis: a french perspective
abstract: BackgroundJuvenile idiopathic arthritis (JIA) is a rare disease that is not widely known by paediatricians and general practitioner (GP) leading to diagnostic error and delayed care provision. We aimed to analyse patient’s journey and time to diagnosis of JIA (delay from the first symptom to the diagnosis of JIA).We performed a retrospective cohort study of 67 patients diagnosed with JIA and seen in the paediatric rheumatology department of the Kremlin Bicêtre Hospital, between July 2002 and January 2015. Patients were selected for analysis in order to represent an equal distribution of five JIA subtypes: oligoarticular onset (21), polyarticular onset (13), enthesitis-related arthritis (17), and systemic onset (16).ResultsSixty-seven patients were finally analysed (42 girls). Before JIA diagnosis was made, patients had visited a mean of three physicians (3.6 ± 1.4 (mean; SD)). Emergency room physicians (52%) were the first patient’s referral before GP (42%). Paediatric rheumatologists were mostly seen as third referral (52% versus 3% at first referral). Reactive arthritis (34%) and septic arthritis (24%) represented both the most common initial diagnosis. JIA was suspected after an average median time delay of 3 months (0.26–81.2) except for 25 patients (37%): SJIA (n = 9), ERA (n = 7), OAJIA (3) and POJIA (n = 6) for whom diagnosis was suspected straightaway. In most cases (88%), JIA was established by paediatric rheumatologists.Surprisingly, the median total time to diagnosis in our population was rather short (3 months). Paediatric rheumatologist played a major role in making the diagnosis but the journey to reach them was long and complex with multiple referrals. These results reinforce the necessity of improving GP and emergency physician’s awareness and education on paediatric rheumatic diseases as the importance of a strong network in paediatric rheumatology to improve patient’s level of care.ConclusionWe highlighted the complex patient’s journey to diagnosis in children with JIA and made assumptions that reference center might reduce time to diagnosis although not statically proven. Further analysis with a larger number of patients might be needed to better investigate this probability.

title: Delay in access to appropriate care for children presenting with musculoskeletal symptoms and ultimately diagnosed with juvenile idiopathic arthritis.
abstract: To document pathways of care, management, and interval from onset of symptoms to first pediatric rheumatology multidisciplinary team (PRhMDT) assessment for children with incident juvenile idiopathic arthritis (JIA).



We conducted a retrospective observational study of children with incident JIA over a 3-year period.



The study included 152 patients with JIA (87 females). The median interval from symptom onset to first PRhMDT assessment was 20 weeks (range 0-416), with significant variation between JIA subtypes (P = 0.0097); children with extended oligoarticular JIA had the longest interval (median 60 weeks, range 12-320). Prior to pediatric rheumatology assessment, many children had referrals to multiple secondary care specialties and had been subjected to multiple and often invasive procedures including arthroscopy/synovial biopsy (18 [11.8%] of 152), but none were referred for ophthalmologic screening, physical therapy, or nursing input and a diagnosis of JIA was rarely made (98%). At first PRhMDT assessment, most patients had untreated active disease with active joint count >or=1 (135 [89%] of 152), restricted joint count >or=1 (135 [89%] of 152), and functional disability by Child Health Assessment Questionnaire score >0 (53 [68%] of 118); 1 child had undetected uveitis. Following PRhMDT assessment, interventions were invariably indicated, including joint injections (69 [45%] of 152), methotrexate (49 [32%] of 152), and physical therapy programs (all patients).



Delay in access to pediatric rheumatology assessment is common with complex pathways of referral. Many children were subjected to inappropriate invasive investigations and many had prolonged untreated active disease at the initial PRhMDT assessment. This delay is likely to affect long-term outcome and warrants further exploration.

title: Management of Juvenile Idiopathic Arthritis 2015: A Position Statement from the Pediatric Committee of the Canadian Rheumatology Association
abstract: The medical management of juvenile idiopathic arthritis (JIA) and its complications has undergone significant changes in the last decade, a result largely of the introduction of biologics and increased availability of expertise in the diagnosis and management of rheumatic diseases in children and adolescents. The result is that clinical outcome has improved and complete disease control can often be achieved1.

In 2010, the British Society for Paediatric and Adolescent Rheumatology (BSPAR) proposed guidelines for the optimal management of children and adolescents with JIA2. This advocacy statement emphasizes the importance of empowering children and their caregivers, facilitating early detection of JIA, prompt referral to a team of health professionals who are expert in the diagnosis and management of childhood rheumatic diseases, prompt access to all appropriate pharmacologic and biologic therapies, and regular followup and monitoring. The Canadian Wait Time Alliance sets acceptable wait times as 4 weeks in children with JIA, other than systemic onset JIA, and within 7 days of disease onset for children with systemic onset JIA. Screening for asymptomatic uveitis should take place within 4 weeks of the diagnosis of JIA3. Ideally, children and adolescents with JIA should be managed by a team of health professionals with training and experience in pediatric rheumatology given … 

Address correspondence to Dr. R.E. Petty, Division of Rheumatology, Department of Pediatrics, University of British Columbia, British Columbia’s Children’s Hospital, 4480 Oak St., Room K4-114, Vancouver, British Columbia V6H 3V4, Canada; E-mail: rpetty{at}cw.bc.ca

title: Predictors of early inactive disease in a juvenile idiopathic arthritis cohort: results of a Canadian multicenter, prospective inception cohort study.
abstract: To determine early predictors of 6-month outcomes in a prospective cohort of patients with juvenile idiopathic arthritis (JIA).



Patients selected were those enrolled in an inception cohort study of JIA, the Research in Arthritis in Canadian Children Emphasizing Outcomes Study, within 6 months after diagnosis. The juvenile rheumatoid arthritis core criteria set and quality of life measures were collected at enrollment and 6 months later. Outcomes evaluated included inactive disease, Juvenile Arthritis Quality of Life Questionnaire (JAQQ) scores, and Childhood Health Assessment Questionnaire (C-HAQ) scores at 6 months.



Thirty-three percent of patients had inactive disease at 6 months. Onset subtype and most baseline core criteria set measures correlated with all 3 outcomes. Relative to oligoarticular JIA, the risks of inactive disease were lower for enthesitis-related arthritis, polyarthritis rheumatoid factor (RF)-negative JIA, and polyarthritis RF-positive JIA, and were similar for psoriatic arthritis. In multiple regression analyses, the baseline JAQQ score was an independent predictor of all 3 outcomes. Other independent baseline predictors included polyarthritis RF-negative and systemic JIA for inactive disease; C-HAQ score and polyarthritis RF-positive JIA for the 6-month C-HAQ score; and active joint count, pain, and time to diagnosis for the 6-month JAQQ score.



Clinical measures soon after diagnosis predict short-term outcomes for patients with JIA. The JAQQ is a predictor of multiple outcomes. Time to diagnosis affects quality of life in the short term.

title: Development of System-level Performance Measures for Evaluation of Models of Care for Inflammatory Arthritis in Canada
abstract: To develop system-level performance measures for evaluating the care of patients with inflammatory arthritis (IA), including rheumatoid arthritis (RA), psoriatic arthritis, ankylosing spondylitis, and juvenile idiopathic arthritis.  This study involved several methodological phases. Over multiple rounds, various participants were asked to help define a set of candidate measurement themes. A systematic search was conducted of existing guidelines and measures. A set of 6 performance measures was defined and presented to 50 people, including patients with IA, rheumatologists, allied health professionals, and researchers using a 3-round, online, modified Delphi process. Participants rated the validity, feasibility, relevance, and likelihood of use of the measures. Measures with median ratings ≥ 7 for validity and relevance were included in the final set.  Six performance measures were developed evaluating the following aspects of care, with each measure being applied separately for each type of IA except where specified: waiting times for rheumatology consultation for patients with new onset IA, percentage of patients with IA seen by a rheumatologist, percentage of patients with IA seen in yearly followup by a rheumatologist, percentage of patients with RA treated with a disease-modifying antirheumatic drug (DMARD), time to DMARD therapy in RA, and number of rheumatologists per capita.  The first set of system-level performance measures for IA care in Canada has been developed with broad input. The measures focus on timely access to care and initiation of appropriate treatment for patients with IA, and are likely to be of interest to other arthritis care systems internationally.

title: Validation of administrative case ascertainment algorithms for chronic childhood arthritis in Manitoba, Canada
abstract: We validated case ascertainment algorithms for juvenile idiopathic arthritis (JIA) in the provincial health administrative databases of Manitoba, Canada. A population-based pediatric rheumatology clinical database from April 1st 1980 to March 31st 2012 was used to test case definitions in individuals diagnosed at ≤15 years of age. The case definitions varied the number of diagnosis codes (1, 2, or 3), time frame (1, 2 or 3 years), time between diagnoses (ever, >1 day, or ≥8 weeks), and physician specialty. Positive predictive value (PPV), sensitivity, and specificity with 95% confidence intervals (CIs) are reported. A case definition of 1 hospitalization or ≥2 diagnoses in 2 years by any provider ≥8 weeks apart using diagnosis codes for rheumatoid arthritis and ankylosing spondylitis produced a sensitivity of 89.2% (95% CI 86.8, 91.6), specificity of 86.3% (95% CI 83.0, 89.6), and PPV of 90.6% (95% CI 88.3, 92.9) when seronegative enthesopathy and arthropathy (SEA) was excluded as JIA; and sensitivity of 88.2% (95% CI 85.7, 90.7), specificity of 90.4% (95% CI 87.5, 93.3), and PPV of 93.9% (95% CI 92.0, 95.8) when SEA was included as JIA. This study validates case ascertainment algorithms for JIA in Canadian administrative health data using diagnosis codes for both rheumatoid arthritis (RA) and ankylosing spondylitis, to better reflect current JIA classification than codes for RA alone. Researchers will be able to use these results to define cohorts for population-based studies.

title: High Adherence to System‐Level Performance Measures for Rheumatoid Arthritis in a National Early Arthritis Cohort Over Eight Years
abstract: To assess adherence to 3 system‐level performance measures in a national early rheumatoid arthritis (RA) cohort.

title: Feasibility of Measurement and Adherence to System Performance Measures for Rheumatoid Arthritis in 5 Models of Care
abstract: To test the feasibility of reporting on 4 national performance measures for patients with rheumatoid arthritis (RA) in 5 different models of care.  The following performance measures were evaluated in 5 models of care: waiting time (WT) to rheumatologist consultation, percentage of patients seen in yearly followup (FU), percentage taking disease-modifying antirheumatic drugs (DMARD), and time to starting DMARD. All models aimed to improve early access and care for patients with RA.  A number of feasibility issues were encountered in performance measure evaluation because of differences in site data collection and/or the duration of the model of care. For example, while 4/5 programs maintained clinical or research databases, chart reviews were still required to report on WT. Median WT for care in 2015 varied by site between 21 and 75 days. Yearly FU rates could only be calculated in 2 sites (combined owing to small numbers) and varied between 83% and 100%. Percentage of patients taking a DMARD and time to DMARD could be calculated in 3 models, and rates of DMARD use were between 90% and 100%, with median time to DMARD of 0 days in each.  Our review has shown that even in models of care designed to improve access to care and early treatment, data to document improvements are often lacking. Where data were available for measuring, deficits in WT performance were noted for some centers. Our results highlight a need to improve reporting processes to drive quality improvement.

title: THU0567 Testing performance measures identifies gaps in juvenile idiopathic arthritis (JIA) care
abstract: JIA is the most prevalent type of childhood inflammatory arthritis. Timely diagnosis, treatment and ongoing care by a paediatric rheumatologist are associated with improved outcomes.  To test the Arthritis Alliance of Canada’s JIA Performance Measures: i) The percentage of patients with new onset JIA with at least one visit to a paediatric rheumatologist in the first year of diagnosis; ii) The percentage of patients with JIA under rheumatology care seen in follow-up by a paediatric rheumatologist at least once per year.  JIA case ascertainment algorithms were used to identify cases from provincial health administrative databases in Manitoba, Canada in patients<16 years of age with ≥6 months of health insurance coverage in the population registry between 01/04/2005 and 31/03/2015. Cases were identified by either 1 hospitalisation separation with an International Classification of Disease (ICD)−10 code for JIA (M05.X, M06.X, M08.X, M45.X) or ≥2 physician billing claims (ICD-9 codes: 714.x or 720.x) for JIA≥8 weeks apart within 2 years. A 3 year washout period prior to the first code was used to determine the percentage of incident JIA patients with ≥1 visit to a paediatric rheumatologist in the first year. For reporting the percentage of JIA patients seen in yearly follow-up, once a patient is seen at least twice by a paediatric rheumatologist they are considered under rheumatology care. The measure was computed by comparing yearly observed and expected follow-ups. The proportion of patients with gaps in care of >12 and>14 months between consecutive rheumatologist visits was also calculated. As there is no paediatric rheumatologist identifier in Manitoba administrative datasets, a physician was identified as a paediatric rheumatologist if they had ≥40 visits for individuals≤16 years in a year and at least 50% of those visits in a year were JIA. This identified 5 physicians.  194 incident cases of JIA were diagnosed between 01/04/2008 and 03/31/2015. The median age at diagnosis was 9.1 years (Q1 5.5, Q3 12.8) and 71% were female. Table 1 describes the number of JIA cases who saw a paediatric rheumatologist within a year of diagnosis (between 51% and 81%). Table 2 describes the percentage of patients seen on a yearly basis with no significant changes seen over time (p=0.47). A single gap of >12 months was seen in 52% (n=144) and ≥2 gaps of >12 months were seen in 11% (n=28). One gap of >14 months was seen in 34% of cases, and only 5% had ≥2 gaps>14 months. year combined due to small sample sizes, n<5) Number of incident JIA cases Percentage seen by a paediatric rheumatologist within a year 2008/2010 50 80% 2010/2012 54 81% 2012/2014 55 78% 2014/2015 35 51%Abstract THU0567 – Table 2 Proportion of JIA follow-up visits by a paediatric rheumatologist using fixed 12-month intervals 2008/09 2009/10 2010/11 2011/12 2012/13 2013/14 2014/15 Observed 74 94 82 72 70 66 68 Expected 101 120 114 116 123 116 118 Percent 73 78 72 62 57 57 58 Conclusions Many JIA patients are not seen by a paediatric rheumatologist within a year of diagnosis, and up to half of those followed have at least 1 gap in care of >12 months. Such gaps may lead to a delay in diagnosis, timely treatment and ongoing care that could impact outcomes. Disclosure of Interest None declared

title: Factors Associated with a Longer Time to Access Pediatric Rheumatologists in Canadian Children with Juvenile Idiopathic Arthritis
abstract: The Research on Arthritis in Canadian Children Emphasizing Outcomes (ReACCh Out) cohort is a prospective inception cohort of patients with newly diagnosed juvenile idiopathic arthritis (JIA) seen in 16 Canadian pediatric rheumatology (PR) centers. We used data from this cohort to explore factors associated with longer time from symptom onset to the first visit to (PR), and with longer time from first visit to a diagnosis of JIA.  We included children enrolled in ReACCh Out within 6 months of JIA diagnosis, for whom the dates of symptom onset and first PR visit were recorded. We used Cox proportional hazard modeling to investigate the effects of history, physical examination, and laboratory evaluation on the interval from JIA symptom onset to first PR assessment.  In total, 319 children from the cohort were included. Having a fever (hazard ratio 1.80, 95% CI 1.10, 2.93), any part South Asian ethnicity (HR 1.75, 95% CI 1.04, 2.95), highly educated parents (HR 1.69, 95% CI 1.18, 2.44), and limp (HR 1.55, 95% 1.16, 2.06) were significantly associated with shorter time from symptom onset to first PR assessment, while a history of heel pain or enthesitis (HR 0.61, 95% 0.38, 0.97) was significantly associated with a longer time to first PR visit.  Children with a history of a fever, limp, any part South Asian ethnicity, or highly educated parents were more likely to see PR sooner than patients without these features, while children with a history of enthesitis received PR care later than those without enthesitis.

title: Predictors of delayed referral to a pediatric rheumatology center.
abstract: To report on referral patterns of primary physicians for children subsequently diagnosed with juvenile idiopathic arthritis (JIA) and to identify predictors of delayed referral to a pediatric rheumatology center.



A retrospective cohort study of consecutive patients with JIA referred to a pediatric rheumatology center over a 15-year period was performed. Variables included age, sex, JIA subtype, the physician's subspecialty, and distance to the pediatric rheumatology center. Outcome parameters were the time to first presentation to a primary physician, the time to the first rheumatology visit, and the total time to referral. Putative predictors were evaluated by analysis of variance, resulting in regression models.



A total of 132 patients with JIA were included; 83 (63%) were female. The median age at the onset of symptoms was 4.5 years (range 1.0-15.8 years). Most frequently, children were referred by pediatricians (49.4%) or orthopedic surgeons (34.1%). The median time to first presentation was short at 10 days (range 0-1,610 days). In contrast, the median time to first rheumatology visit was 60 days (range 0.0-2,100.0 days), resulting in a long median total time to referral of 90 days (range 0.0-2,160.0 days). Statistically significant predictors for delayed referral were the primary physician's subspecialty (P = 0.016) and the distance to the pediatric rheumatology center (P = 0.001). Children living in remote areas or referred by orthopedic surgeons had the longest referral times.



Despite free access to health care in Germany, children with JIA are referred to pediatric rheumatology centers with significant delay. Educational interventions targeting primary physicians and orthopedic surgeons may contribute to earlier referral to pediatric rheumatology centers and improve outcome in patients with JIA.

title: Association between duration of symptoms and severity of disease at first presentation to paediatric rheumatology: results from the Childhood Arthritis Prospective Study
abstract: To study the association between disease severity at first presentation to paediatric rheumatology (PRh) and length of time since symptom onset in children recruited to the Childhood Arthritis Prospective Study.  Children ≤16 yrs with inflammatory arthritis persisting ≥2 weeks were recruited from five UK hospitals. Data including demographics, disease features, Childhood Health Assessment Questionnaire (CHAQ), physician and parent global assessment and blood tests were collected at the first appointment with PRh (baseline). The association between symptom duration (defined as time from first reported symptom onset to presentation at PRh) and baseline disease characteristics was evaluated using non-parametric descriptive statistics and multivariable logistic regression analyses.  Five hundred and seven children (65% female) were included: median age at onset was 6.8 yrs. Two hundred and thirty-three had oligoarthritis, 68 had RF-negative polyarthritis, 27 had systemic onset arthritis and 29 had arthritis that was not JIA. The median symptom duration was 4.6 months. Median symptom duration was shortest for children presenting with systemic arthritis (1.6 months) and longest for those with PsA (8.6 months). Children with a longer duration of symptoms were older and had higher median active joint counts but lower median ESR. Symptom duration did not correlate with CHAQ score at presentation.  Children who have systemic arthritis had the shortest delay to PRh presumably because they are profoundly unwell. Children with joint pain/stiffness but normal ESR had longer delays suggesting that if blood tests do not indicate inflammation, the diagnosis of JIA may be overlooked.

title: Trends in paediatric rheumatology referral times and disease activity indices over a ten-year period among children and young people with Juvenile Idiopathic Arthritis: results from the childhood arthritis prospective Study
abstract: The medical management of JIA has advanced significantly over the past 10 years. It is not known whether these changes have impacted on outcomes. The aim of this analysis was to identify and describe trends in referral times, treatment times and 1-year outcomes over a 10-year period among children with JIA enrolled in the Childhood Arthritis Prospective Study.  The Childhood Arthritis Prospective Study is a prospective inception cohort of children with new-onset inflammatory arthritis. Analysis included all children recruited in 2001–11 with at least 1 year of follow-up, divided into four groups by year of diagnosis. Median referral time, baseline disease pattern (oligoarticular, polyarticular or systemic onset) and time to first definitive treatment were compared between groups. Where possible, clinical juvenile arthritis disease activity score (cJADAS) cut-offs were applied at 1 year.  One thousand and sixty-six children were included in the analysis. The median time from symptom onset and referral to first paediatric rheumatology appointment (22.7–24.7 and 3.4–4.7 weeks, respectively) did not vary significantly (∼20% seen within 10 weeks of onset and ∼50% within 4 weeks of referral). For oligoarticular and polyarticular disease, 33.8–47 and 25.4–34.9%, respectively, achieved inactive disease by 1 year, with ∼30% in high disease activity at 1 year. A positive trend towards earlier definitive treatment reached significance in oligoarticular and polyarticular pattern disease.  Children with new-onset JIA have a persistent delay in access to paediatric rheumatology care, with one-third in high disease activity at 1 year and no significant improvement over the past 10 years. Contributing factors may include service pressures and poor awareness. Further research is necessary to gain a better understanding and improve important clinical outcomes.

title: Stand Up and Be Counted: Measuring and Mapping the Rheumatology Workforce in Canada
abstract: To characterize the practicing rheumatologist workforce, the Canadian Rheumatology Association (CRA) launched the Stand Up and Be Counted workforce survey in 2015.  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.  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.  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.

title: Demography of a regional pediatric rheumatology patient population. Affiliated Children's Arthritis Centers of New England.
abstract: To examine the descriptive epidemiology of a regional cohort of children with rheumatic disease, and to document the variety and frequency of diseases encountered among pediatric rheumatology centers.



Pediatric rheumatology centers in southern New England participated in a prospective multicenter patient registry. All outpatients attending clinics at 8 pediatric rheumatology centers were enrolled as subjects during the 8-year period of study (n = 4585). Diagnostic criteria defined the rheumatic disease cases which were determined by clinical examination by a pediatric rheumatologist, and record linkage was achieved to avoid duplication of subjects.



Rheumatic conditions were diagnosed in 1742 subjects. Juvenile rheumatoid arthritis (JRA) was the most frequently encountered rheumatic condition (53%), followed by spondyloarthropathy syndromes (13%), vasculitis (10%), systemic lupus erythematosus (SLE) (6%), isolated Raynaud's phenomenon (5%), dermatomyositis/polymyositis (DM/PM) (5%), and scleroderma (2%). The mean annual incidence of JRA, spondyloarthropathy syndromes, SLE and DM/PM among children referred to pediatric rheumatology centers in Massachusetts was 4.0, 2.0, 0.4 and 0.4 per 100,000 children at risk, respectively. Nonrheumatic conditions were diagnosed in 2843 subjects, among which musculoskeletal conditions were most frequent (56%) followed by infectious disorders (18%), psychogenic disorders (3%), fever of unknown origin (2%), and abnormal immune serology without a specific diagnosis (2%).



The use of a multicenter patient registry was successful in allowing the collection of descriptive epidemiologic data on a large and well defined sample of children with rare disorders.

title: Onset to first visit intervals in childhood rheumatic diseases.
abstract: To determine time intervals between onset of symptoms of a childhood rheumatic disease and first visit to a pediatric rheumatology clinic and to evaluate factors influencing onset to first visit intervals.



Onset to first visit intervals were analyzed in 836 children representing the 10 most common diseases in a pediatric rheumatology clinic population of 1093.



Among 836 subjects, 469 (56.1%) could identify month of symptom onset. Among patients with juvenile rheumatoid arthritis (JRA) 125 of 195 (64.1%) with pauciarticular, 58 of 105 (55.2%) with polyarticular, and 28 of 36 (77.8%) with systemic subtypes were able to determine time interval between symptom onset and first visit. Month intervals were confidently established in 80 of 250 with a spondyloarthropathy (32.4%), 19 of 52 (36.5%) with psoriatic arthropathy, 65 of 72 (90.3%) with Henoch-Schönlein purpura (HSP), 50 of 56 (89.3%) with Kawasaki disease, 22 of 34 (64.7%) with systemic lupus erythematosus, 13 of 18 (72.2%) with dermatomyositis, and 9 of 18 (50%) with localized scleroderma. Determination of onset was significantly more likely in HSP than in other diagnostic categories except systemic JRA, and more likely in Kawasaki disease than other disease categories except systemic JRA and dermatomyositis. In the group of 469, 287 (61.2%) were seen within 2 months of symptom onset and 447 (95.3%) within 1 year of symptom onset.



Diseases ordinarily typified by an abrupt and acute onset of symptoms were referred most promptly, suggesting that acuity of symptoms at disease onset is the factor that most influences promptness of referral. Prospective studies are required to establish how onset to first visit intervals might influence disease outcomes and to devise best practice referral guidelines.

title: Paediatric rheumatology practice in the UK benchmarked against the British Society for Paediatric and Adolescent Rheumatology/Arthritis and Musculoskeletal Alliance Standards of Care for juvenile idiopathic arthritis.
abstract: To describe current clinical practice against the BSPAR/ARMA Standards of Care (SOCs) for children and young people (CYP) with incident JIA.



Ten UK paediatric rheumatology centres (including all current centres nationally accredited for paediatric rheumatology higher specialist training) participated in a retrospective case notes review using a pretested pro forma based on the SOC. Data collected per centre included clinical service configuration and the initial clinical care for a minimum of 30 consecutive new patients seen within the previous 2 years and followed up for at least 6 months.



A total of 428 CYP with JIA (median age 11 years, range 1-21 years) were included, with complete data available for 73% (311/428). Against the key SOCs, 41% (175/428) were assessed ≤10 weeks from symptom onset, 60% (186/311) ≤4 weeks from referral, 26% (81/311) had eye screening at ≤6 weeks, 83% (282/341) had joint injections at ≤6 weeks, 59% (184/311) were assessed by a nurse specialist at ≤4 weeks and 45% (141/311) were assessed by a physiotherapist at ≤8 weeks. A median of 6% of patients per centre participated in clinical trials. All centres had access to eye screening and prescribed biologic therapies. All had access to a nurse specialist and physiotherapist. Most had access to an occupational therapist (8/10), psychologist (8/10), joint injection lists (general anaesthesia/inhaled analgesia) (9/10) and designated transitional care clinics (7/10).



This first description of UK clinical practice in paediatric rheumatology benchmarked against the BSPAR/ARMA SOCs demonstrates variable clinical service delivery. Considerable delay in access to specialist care is evident and this needs to be addressed in order to improve clinical outcomes.

title: The Rising Burden of Rheumatoid Arthritis Surpasses Rheumatology Supply in Ontario
abstract: ObjectivesAccurate 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.MethodsWe 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.ResultsThe 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).ConclusionOver 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.RésuméObjectifsLes données précises sur le fardeau de la polyarthrite rhumatoïde (PR) sont rares mais essentielles pour aider le personnel soignant et les décideurs à optimiser les stratégies cliniques et de santé publique en gestion des soins thérapeutiques. Nous avons chiffré le fardeau de la PR en Ontario de 1996 à 2010 selon l’âge, le sexe et la région de planification sanitaire.MéthodeNous avons utilisé la base de données administratives sur la polyarthrite rhumatoïde de l’Ontario (ORAD), une cohorte populationnelle validée de tous les Ontariens atteints de PR, pour estimer la prévalence et l’incidence brutes de la PR selon le sexe et le groupe d’âge de 1996 à 2010. Nous avons aussi déterminé le fardeau de la maladie selon la région de résidence des patients et l’offre en rhumatologie.RésultatsLe nombre de patients atteints de PR a augmenté avec le temps, passant de 42 734 Ontariens (0,5%) en 1996 à 97 499 (0,9%) en 2010. En moyenne, 5 830 nouveaux patients par année ont reçu un diagnostic de PR. En 2010, le fardeau était plus lourd chez les femmes (1,3%) que chez les hommes (0,5%), et il augmentait avec l’âge: près de la moitié des patients atteints de PR avaient 65 ans et plus. Le fardeau était plus lourd dans les communautés nordiques (1,0%) que dans les agglomérations urbaines du Sud (0,7%). Sur la période de l’étude, le nombre de rhumatologues exerçant en Ontario est resté inchangé (environ 160).ConclusionSur une période de 15 ans, le nombre de patients atteints de PR a plus que doublé, sans augmentation comparable du nombre de rhumatologues en exercice. Nous avons relevé des écarts régionaux considérables dans le fardeau de la maladie, les plus hauts taux étant observés dans le Nord. Nos constatations soulignent le besoin d’approches régionales en matière de planification et de prestation des soins de la PR afin de composer avec l’alourdissement du fardeau.