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

• Published in: BMC health services research Vol. 19; no. 1; p. 572
• Main Authors: Barber, Claire E H, Lix, Lisa M, Lacaille, Diane, Marshall, Deborah A, Kroeker, Kristine, Benseler, Susanne, Twilt, Marinka, Schmeling, Heinrike, Barnabe, Cheryl, Hazlewood, Glen S, Bykerk, Vivian, Homik, Joanne, Thorne, J Carter, Burt, Jennifer, Mosher, Dianne, Katz, Steven, Shiff, Natalie J
• Format: Journal Article
• Language: English
• Published: England BioMed Central Ltd 14-08-2019; BioMed Central; BMC
• Subjects: Algorithms; Arthritis; Arthritis, Juvenile - epidemiology; Arthritis, Juvenile - therapy; Care and treatment; Child; Diagnosis; Female; Follow-Up Studies; Health; Health Services Accessibility - statistics & numerical data; Humans; Juvenile arthritis; Juvenile idiopathic arthritis; Male; Manitoba - epidemiology; Needs Assessment; Pediatric research; Pediatrics; Practice; Quality improvement; Quality Indicator; Referral and Consultation - statistics & numerical data; Rheumatologists; Rheumatology; Risk factors; Manitoba; Quality Indicator; Quality improvement; Juvenile idiopathic arthritis
• ISSN: 1472-6963; 1472-6963
• DOI: 10.1186/s12913-019-4379-4

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).
Validated 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.
One 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.
Suboptimal 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.