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

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Summary

Introduction

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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