Families of children with juvenile idiopathic arthritis who are at risk for uveitis and live farther away from their specialists may face annual travel expenses four to five times higher than those who live closer, new research shows.

Patients who lived 30 miles or more from their physician accrued higher annual travel costs than those living within a 30-mile radius, according to research presented at the Association for Research in Vision and Ophthalmology (ARVO) 2026 Annual Meeting.

Researchers used electronic health record data from Vanderbilt University, Nashville, Tennessee, and the University of California Los Angeles to identify 119 patients aged 17 years or younger with juvenile idiopathic arthritis who were at high risk of developing uveitis. They used zip codes and mapping software to estimate driving distances and applied the standard Internal Revenue Service travel reimbursement rate of $0.70 per mile to estimate travel costs.

The median yearly travel cost was about $146 across all patients combined, but costs varied depending on how far patients lived from their physician. Patients who lived more than 30 miles away had median annual expenses of about $435 in Tennessee and $314 in California, whereas local patients had median annual expenses of about $77 in Tennessee and $86 in California.

“Past studies have shown that there is a significant travel burden to the nearest uveitis specialist for a large proportion of Americans,” said John Doran, fourth-year medical student at Vanderbilt University School of Medicine, who helped conduct the study. “For example, one study found that 94% of uveitis specialists were based in urban areas. This further indicates how rural patients and their families face a higher burden of care than those in urban settings.”

About 10%-20% of children with juvenile idiopathic arthritis develop uveitis, usually with no symptoms. Current guidelines recommend that those at high risk receive eye screenings every 3 months during the first 4 years after the diagnosis of juvenile idiopathic arthritis. 

Jane Ashworth, BMBCh, PhD, consultant pediatric ophthalmologist at Manchester Royal Eye Hospital, Manchester, England, said screening is important because uveitis often develops without obvious symptoms. Travel burdens are real for families, she said, but warned that convenience alone should not drive screening decisions.

“When I first started being a pediatric ophthalmologist about 20 years ago, patients used to have screenings close to home by nonpediatric general ophthalmologists and a lot of uveitis was missed because it’s not something that’s that easy to pick up in a young child, or the management was not coordinated with pediatric rheumatology,” Ashworth said. “Although it may be more convenient for the patient to be seen locally that may not be the most appropriate thing.”

Those challenges are part of what motivated the research, Doran said.

“We could tell that these screenings were a financial burden on families,” Doran said. “Access to a uveitis specialist in this country is limited.”

Doran said the findings likely underestimate the full burden of care and that future research will examine additional costs families face beyond travel expenses.

“Once we have a clearer picture of the total costs for attending these screenings, this will inform a future cost-benefit analysis in the hopes of one day safely relaxing screening guidelines for this population,” he said.

Sapna Gangaputra, MD, ophthalmologist and associate professor at Vanderbilt University Medical Center, served as the principal investigator of this study.

This study was supported in part by the Research to Prevent Blindness Unrestricted Grant. No other financial disclosures were reported.