Background/Purpose: Pediatric rheumatologists have successfully improved the life expectancy and quality of life of children with systemic lupus (cSLE). cSLE has higher morbidity and mortality than adult SLE; the young adult with SLE may have severe system involvement at the time of transition. The consequences of poor transition in this at-risk population are loss of continuity in care and medication regimen, as well as worse disease activity and damage. As data are scarce on successful transition of cSLE patients to adult care, we conducted a pilot study to better understand how to facilitate this transition.

Methods: Patients with cSLE ≥14 years old who fulfilled ACR SLE criteria were evaluated using a 29-item Transition Readiness Questionnaire (SLE-TRQ) adapted from transitioning questionnaires in other chronic disease. It included medical and life skills, medical knowledge and independent living, and feelings/stress about transition. A protocol based on the American Academy of Pediatrics guidelines for successful transition was implemented for patients ≥18 years old. All patients met with the adult rheumatologist in the pediatric clinic and were accompanied to their first adult clinic visit by the Pediatric Rheumatology nurse. Successful transition was defined as ≥ 3 visits with the adult rheumatologist. All successfully transitioned patients were asked to complete a Satisfaction Questionnaire (SQ).

Results: 40 patients with a mean age of 18.4 years completed the SLE-TRQ. The mean disease duration was 5.25 years; 75% were female; 45% Hispanic, 40% African American, 7% Caucasian. There were 93% who had major organ involvement, 19 (48%) renal disease, 8 (20%) neuropsychiatric lupus, 3 (10%) abnormal pulmonary function tests and 2 (5%) anti-phospholipid syndrome. Eleven patients were on prednisone, median dose 20 mg/day at the time of enrollment. Over 50% were non-adherent at least on one occasion with medications and appointments. On the SLE-TRQ, 27 patients reported good medical and life skills, and 14 had good knowledge. However, 16/40 admitted to uneasiness/unreadiness for transition. The mean scores were: skills- 1.39, knowledge- 2.4 and feelings about transition- 2.3, where scores of 4-5 identify patients that are not ready, 2-3 patients in preparation and 0-1 ready for transition. Of the 20 patients scheduled to transition, 12 were successfully transferred, and 8 remain under pediatric care, scheduled to transition at a later date. The mean SLEDAI at the last pediatric visit was 5.6 and at the third adult visit 5.25. Three patients were on prednisone (mean dose 13.8 mg/day). Nine patients completed the SQ, reporting satisfaction with the transition process.

Conclusion: This is the first study evaluating self-reported pre-transition readiness in cSLE and satisfaction with the transition process. Patients had good medical knowledge and independent living skills but were not psychologically ready to transition. We were able to successfully transition 60% of the patients with good satisfaction. However, 40% were not transitioned, suggesting adolescents with cSLE and major organ involvement need additional support in the transition to adult rheumatology.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/transitioning-lupus-patients-from-pediatric-to-adult-rheumatology/