Abstract
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. PM1: 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. PM2: 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.
Highlights
The 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)
The objective of this study was to evaluate the two Arthritis Alliance of Canada (AAC) performance measures related to access to rheumatologist care and that are applicable to JIA at a population-level: i) The percentage of patients with new onset JIA with at least one visit to a pediatric rheumatologist in the first year of diagnosis; ii) The percentage of patients with a diagnosis of JIA under the care of a pediatric rheumatologist seen in follow-up by a pediatric rheumatologist at least once per year
Performance Measure 1: We identified 194 incident JIA cases diagnosed between April 1st 2008 and March 31st 2015
Summary
The 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). Waiting time benchmarks for JIA in Canada have been set at 4 weeks between referral and pediatric rheumatologist visit (with the Barber et al BMC Health Services Research (2019) 19:572 exception of systemic onset JIA which is 7 days) [4, 8]. These benchmarks are similar to those set by other organizations including the British Society of Paediatric and Adolescent Rheumatology (BSPAR, referral within 10 weeks of symptom onset and visit 4 weeks from referral) [6]. Ongoing pediatric rheumatology care is important, and recommended frequency of visits is based on a variety of factors, including disease severity and treatment monitoring [4]
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