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Transitioning From Pediatric to Adult Care Is a Vulnerable Time for Patients With Rheumatic Diseases


Pediatric patients who had a referral from their pediatric rheumatologist and continued insurance coverage saw decreased delays when transitioning to an adult rheumatology clinic.

The transfer from pediatric care to adult care can be a challenging time with gaps in health insurance, a lack of family and social support systems, and inadequate self-management skills. Furthermore, there is a high risk that patients with chronic childhood-onset illnesses will simply be lost to follow-up during the transition, resulting in higher health care utilization and mortality.

Pediatric patients who had a referral from their pediatric rheumatologist and continued insurance coverage saw decreased delays when attending an adult rheumatology clinic, but some patients had higher rates of unscheduled health care utilization, according to research published in Arthritis Care & Research.

“While the transfer of care to an adult system can be a high-risk time period for any young adult with a chronic illness, socioeconomically disadvantaged youths have even worse outcomes than the general population,” the authors wrote. “Thus, the importance of a successful transition to adult care within the pediatric rheumatology community is increasingly recognized as a metric of good care.”

The researchers performed a retrospective analysis of pediatric patients who transferred to adult rheumatology in a large hospital system. The study included 151 patients between the ages of 17 and 21 years who were referred to the adult rheumatology clinic between January 1, 2011, and June 30, 2019.

The majority (77%) of patients were female, and 65% were Hispanic, 21% were Black, and 14% were White or Asian. The majority (60%) had connective tissue disease (CTD). Of those patients with CTD, 81% had systemic lupus erythematosus and 30% had juvenile idiopathic arthritis (JIA).

While 77% of referrals to adult rheumatology came from a pediatric rheumatologist, 10% came from an urgent or primary care physician, 10% from an emergency department (ED) physician or hospitalist, 3% from maternal fetal medicine, and 1% from other specialists. The mean age at referral for patients referred from pediatric rheumatology was 18.3 years compared with 19.6 years for patients referred by other clinicians.

Almost all of the patients (91%) had public insurance at the time of referral, less than 1% had private insurance, and 9% had no funding at all. For 33% of patients, insurance coverage had lapsed more than 30 days between pediatric and adult visits.

On average, there were 135 days between referral placement and first scheduled appointment (SD, 115 days; range, 2-694 days). Patients who were referred by a pediatric rheumatologist had a statistically significant shorter time period between pediatric and first adult visit (mean, 144 vs 529 days, P < .0001). Patients referred by a pediatric rheumatologist were also more likely to have documented communication between the pediatric and adult rheumatologists, to have had insurance at referral, to have maintained insurance coverage between pediatric and adult visits, and to have had an overlapping adult visit before their final pediatric visit.

Health care utilization differed based on referral, insurance coverage, race, and diagnostic category. Overall, 26% of patients had an unscheduled hospitalization and 53% had ED visits in the first year after their final pediatric visit. Patients who were referred by a pediatric rheumatologist were far less likely to have a hospitalization compared with patients who were referred from other sources (20% vs 45%, respectively). However, referring physician did not contribute to ED visits.

Patients who either had no insurance at the time of referral or who lost insurance for more than 30 days after their final pediatric visit were also more likely to be hospitalized than patients with insurance (32% vs 16%, respectively). Loss of insurance did not contribute to ED visits in the year after last pediatric visit.

Half (52%) of Black patients had a hospitalization compared with 21% of Hispanic patients and 6% of White or Asian patients. Similarly, 83% of Black patients, 46% of Hispanics, and 39% of Whites or Asians had ED visits.

Patients with a CTD were far more likely to be hospitalized or have an ED visit. Thirty-nine percent of patients with CTD were hospitalized compared with just 8% of patients with other rheumatic diseases and 5% of patients with JIA. More than two-thirds (69%) of patients with CTD had ED visits compared with 42% of patients with other rheumatologic diseases and 27% of patients with JIA.

“The majority of patients in this study had public or no insurance during their pediatric course. It is especially important to ensure that vulnerable transition-age patients have a plan for insurance coverage and an identified adult rheumatologist prior to the transfer to adult care,” lead author Nicole Bitencourt, MD, of UT Southwestern Medical Center, said in a statement. “It may be helpful for pediatric rheumatologists to have a system in place to ensure patients are not lost to follow up before establishing care with an adult rheumatologist.”


Bitencourt N, Bermas BL, Makris UE, Wright T, Reisch J, Solow EB. Time to completed visit and healthcare utilization among young adults transferring from pediatric to adult rheumatologic care in a safety‐net hospital. Arthritis Care Res (Hoboken). Published online September 9, 2020. doi:10.1002/acr.24409

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