A population-based study in the Canadian province of Manitoba has shown that up to 49% of patients with juvenile idiopathic arthritis (JIA) had not been seen by a pediatric rheumatologist within a year of diagnosis and more than half had at least a one-year gap in follow-up care.
The findings highlight the existence of a substantial number of patients who get suboptimal care, which may result in delays in diagnosis and treatment that could compromise patient outcomes.
The study, “Testing population-based performance measures identifies gaps in juvenile idiopathic arthritis (JIA) care,” was published in the journal BMC Health Services Research.
Delays in referrals of children and adolescents with JIA to expert clinicians, commonly pediatric rheumatologists, have been associated with greater disability and poorer quality of life. Thus, current guidelines recommend early diagnosis and treatment for these patients.
In Canada, waiting times for JIA patients have been set at four weeks between referral and the first visit to a pediatric rheumatologist, except for systemic onset JIA, which tends to be the most severe form and for which waiting times have been fixed at seven days.
Ongoing care is also important, and recommended frequency of visits is based on a variety of factors, including disease severity and treatment monitoring.
The goal of the present study was to evaluate JIA care in Canada, with a focus on early and ongoing access to a rheumatologist.
To assess that, two performance measures (PMs) were used: 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 who were seen in follow-up at least once per year (PM2).
The study included patients under 16 years of age, identified from health administrative databases in Manitoba between April 2005 and March 2015. Median age at diagnosis was 9.1 years; 71% were female.
Among 194 patients newly diagnosed with JIA (from 2008 to 2015), the proportion of those who saw a pediatric rheumatologist within one year of diagnosis ranged from 78% to 81%, except for the time period between 2014-2015, when it declined to 51%.
“This decline corresponded with a known decrease in access to pediatric rheumatologist services in the province,” the researchers said.
For those patients expected to receive ongoing care, 58% to 78% were seen once a year at a follow-up visit.
Over half (52%) of all patients experienced one gap and 11% experienced two or more gaps in care of more than one year over the course of follow-up. This declined to 34% (one gap) and 5% (two or more gaps) if a 14-month window between consecutive visits was used.
Moreover, patients who were on follow-up for longer tended to have more gaps in care. The majority of patients (80%) with eight to nine years of follow-up experienced at least one year gap.
“In conclusion, the study demonstrates lower than expected consultations with a pediatric rheumatologist for children and adolescents with JIA in Manitoba, and delays in follow-up for many patients under rheumatology care,” the researchers said.
“It is important that even suspected JIA cases should be referred to a pediatric arthritis specialist for confirmation of diagnosis and initiation of treatment to avoid potentially debilitating outcomes including erosions, flexion contractures, growth abnormalities and vision loss due to uveitis,” they emphasized.
The team also contends that future studies should focus on the impact of care gaps on patient outcomes and identify targets for intervention to improve the performance of care services.