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Patterns of Health Care Utilization and Medication Adherence Among Youth with Systemic Lupus Erythematosus During Transfer from Pediatric to Adult Care


Chang JC1, Knight AM1, Lawson EF1. J Rheumatol. 2020 Feb 1. pii: jrheum.191029. doi: 10.3899/jrheum.191029. [Epub ahead of print]

Author Information

1 From the Division of Rheumatology, Children's Hospital of Philadelphia, Philadelphia, PA, USA; Center for Pediatric Clinical Effectiveness, Children's Hospital of Philadelphia, Philadelphia, PA, USA; Division of Rheumatology, Hospital for Sick Children, Toronto, ON, Canada; SickKids Research Institute, Hospital for Sick Children, Toronto, ON, Canada; Division of Rheumatology, University of California San Francisco Benioff Children's Hospital, San Francisco, CA, USA. This work was funded by NIAMS, CARRA & the Arthritis Foundation. Support for JC from NIH F32HL142176. Address correspondence to Joyce Chang 2716 South St. #11-253 Philadelphia, PA 19146 Email: changj2@email.chop.edu.



Youth with systemic lupus erythematosus (SLE) transferring from pediatric to adult care are at risk for poor outcomes. We describe patterns of rheumatology/nephrology care and changes in health care utilization and medication adherence during transfer.


We identified youth ages 15-25 with SLE using US private insurance claims from Optum's de-identified Clinformatics® Data Mart. Rheumatology/nephrology visit patterns were categorized as 1) unilateral transfers to adult care within 12 months, 2) overlapping pediatric and adult visits, 3) lost to follow-up, or 4) continuing pediatric care. We used negative binomial regression and paired t-tests to estimate changes in health care utilization and medication possession ratios (MPR) after the last pediatric (index) visit. We compared MPRs between youth who transferred and age-matched peers continuing pediatric care.


184 youth transferred out of pediatric care, of which 41.8% transferred unilaterally, 31.5% had overlapping visits over a median of 12 months before final transfer, and 26.6% were lost to follow-up. We matched 107 youth continuing pediatric care. Overall ambulatory utilization decreased among those lost to follow-up. Acute care utilization decreased across all groups. MPRs after the index date were lower in youth lost to follow-up (mean 0.24) compared to peers in pediatric care (0.57, p<0.001).


Youth with SLE with continuous private insurance coverage do not use more acute care after transfer to adult care. However, a substantial proportion fail to see adult subspecialists within 12 months and have worse medication adherence, placing them at higher risk for adverse outcomes.