• Center on Health Equity and Access
  • Clinical
  • Health Care Cost
  • Health Care Delivery
  • Insurance
  • Policy
  • Technology
  • Value-Based Care

Study Finds Delays in Initial Pediatric Rheumatologist Visit for Older Children With JIA


Age at symptom presentation was significantly associated with longer symptom duration for children with juvenile idiopathic arthritis (JIA).

Adolescents with juvenile idiopathic arthritis (JIA) take longer to see a pediatric rheumatologist, potentially impacting longer-term outcomes, according to a study published in The Journal of Rheumatology.

The Childhood Arthritis Prospective Study (CAPS) is a multicenter inception cohort of childhood-onset arthritis in the United Kingdom. The study included 1577 children and younger people (CYP) who received a JIA diagnosis between January 2001 and March 2018.

CYP were divided into the age groups of less than 5 years old, between 5 and 11 years old, and older than 11 years, and the distribution of adolescents in each group was fairly balanced. Most CYP were female (65%) and had oligoarthritis (51%).

Multivariable linear regression was used to evaluate associations between age at presentation and symptom duration.

Findings showed that only 26% of CYP overall saw a pediatric rheumatologist within 10 weeks after JIA symptom onset. This percentage decreased with age, with more children aged younger than 5 years seeing a rheumatologist within this timeframe (35%), compared with those aged between 5 and 11 years (25%) or older than 11 years (17%).

Even after adjusting for demographic characteristics and disease severity, age at symptom presentation was significantly associated with longer symptom duration.

Compared with the youngest age group, children aged between 5 and 11 years took 3.2 months longer (95% CI, 0.5-5.9) and adolescents aged older than 11 years took 6.9 months longer (95% CI, 4.0-9.8), on average, to see a rheumatologist.

“In secondary analyses, both restricting age and symptom duration, and log-transforming symptom duration, produced similar results to the primary analysis: increased symptom duration for older age categories,” the authors noted.

Peaks of JIA incidence occur between ages 0 to 4 and 9 to 14. According to the authors, this longer symptom duration in older children reflects a “substantial unmet need” for timely care, especially taking into account the “window of opportunity” for treatment to facilitate JIA outcomes.

There are many factors that could play a role in these delayed rheumatologist visits for CYP with JIA. First, CYP may be referred to different pathways such as general practice, clinical care, or a pediatric or orthopedic specialist, rather than a pediatric rheumatologist specifically.

Further, symptoms of JIA may initially be thought to be growing pains or fatigue, as many older children experience, by either the child or their guardian.

While associations can be made between age and time before initial pediatric rheumatology visit, it was unclear whether the majority of symptom duration before initial visit was also prior to any health care appointments or if it was during the referral process.

Most CYP with JIA in this study visited a pediatric rheumatologist within a year of symptom onset, however data were highly skewed in some cases where initial visit was over a year after symptom onset, as the authors mentioned.

They added that these findings confirm existing associations between age at JIA diagnosis and clinical factors such as JIA classification, erythrocyte sedimentation rate, and patient-reported pain and wellbeing.

“This potentially impacts the effective treatment of JIA in older CYP within the window of opportunity,” the authors said. “Further work is needed to build engagement with adolescents in seeking care and in recognising paediatric rheumatological conditions in primary practice.”


Shoop-Worrall SJW, Moull L, McDonagh JE, Hyrich KL. The role of age in delays to rheumatological care in juvenile idiopathic arthritis [published online April 1, 2022]. J Rheumatol. doi:10.3899/jrheum.211316

Related Videos
Christopher Phillips, MD
Ted Mikuls, MD, MSPH
Ted Mikuls, MD, MSPH
Ted Mikuls, MD, MSPH
Ted Mikuls, MD, MSPH
Related Content
© 2023 MJH Life Sciences
All rights reserved.