Background/Purpose: Systemic lupus erythematosus (SLE) is a chronic multi-system autoimmune disease affecting 1 in 1000 individuals, of whom 20% develop the disease in childhood. Childhood-onset SLE (cSLE) is typically more severe than adult-onset disease, with increased morbidity and mortality further amplified by risk of attrition on transfer from paediatric to adult care. Two key indicators for successful transition have been proposed: i) patient not being lost to follow up after transfer, and ii) attended all scheduled visits in adult care for at a least a year after transfer.Studies have shown only 50% of paediatric rheumatology patients transition successfully to adult care. Recognizing this risk, we established a paediatric-adult provider dyad transition care model for youth with cSLE in Aug 2016. This begins with a transition clinic at The Hospital for Sick Children (Sickkids) for those turning 18, wherein patients first meet their adult care team, and then transition to Young Adult SLE (YASLE) clinic at Mount Sinai Hospital (MSH). This is a combined clinic staffed by both paediatric and adult rheumatologists that manage all patients collaboratively until the age of 22 years, at which point patients are transferred to adult rheumatology clinic, staffed by the same adult rheumatologist. The purpose of this study was to evaluate the success of this unique transition model from paediatric to adult care.

Methods: A comprehensive retrospective chart review of all cSLE (meeting 1997 ACR or 2012 SLICC Classification Criteria for SLE) graduates from Sickkids at 18 years was conducted since model initiation (Aug 2016) until Dec 2021. Based on the above indicators for “successful transition”, the following outcome measures were reviewed: number of cSLE patients who 1) graduated from Sickkids at 18 years during this time period, 2) attended transition clinic 3) planned to go to MSH vs. other clinic, 4) presented to MSH after transfer (first attrition metric) 5) continued to be followed at least a year after transfer (second attrition metric) and 6) graduated from YASLE clinic to adult rheumatology clinic. Descriptive statistics was used.

Results: A total of 232 cSLE patients graduated from Sickkids over this timeframe. Of those, 58% (n=134) cSLE patients were slated for MSH (42% (n=98) for other clinics). Of 134 cSLE patients, two (1%) did not attend their SickKids transition clinic appointments yet later presented to MSH. One hundred thirty-two (99%) presented to MSH for their first visit, while 1% (n=2) were lost to follow up. Of these 132 cSLE patients, 91% (n=120) were seen within 1 year of transfer, and 99% (n=131) continued to be seen at least a year after transfer vs. one patient (1%) was lost to follow up. Of 66 YASLE clinic patients aged ≥ 22 years, 41% (n=27) graduated and transferred to adult rheumatology clinic, while the majority of the rest (n = 27, 75%) were booked for sometime in the future, or still attending a final YASLE clinic; a small number had moved away (n = 4, 11%).

Conclusion: This unique transition care model rooted in a paediatric-adult provider partnership promotes timely and seamless transfer and transition, which ultimately optimizes healthcare transition outcomes.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/a-paediatric-adult-provider-dyad-care-model-improves-transition-from-paediatric-to-adult-health-care-for-youth-with-childhood-onset-systemic-lupus-erythematosus/