Background/Purpose: Data on the adult outcomes of childhood-onset systemic lupus erythematosus (cSLE ) are lacking, and a feasible methodology is needed to obtain long-term follow-up on these patients after transition from pediatric to adult rheumatology care. The purpose of this study was to use established methodology to develop a prospective longitudinal cohort study of young adults with cSLE, in order to assess long-term clinical, socioeconomic and behavioral health outcomes.

Methods: Based on prior methodology utilized in the University of California San Francisco Lupus Outcomes Study (Yelin, 2007), a 45 minute baseline in-depth telephone interview survey was developed which includes patient-reported validated items pertaining to multiple domains including demographic and socioeconomic characteristics, cumulative disease manifestations, recent SLE activity and assessment of the transition from pediatric to adult rheumatology care. The survey was pilot tested and revised based on responses from the pilot testing. The initial cohort was developed by querying the clinical database from the University of Utah pediatric rheumatology clinic to identify patients diagnosed with cSLE (age <18 years at diagnosis) who are currently 18-30 years of age and met ACR criteria for SLE at diagnosis.  Potential subjects were contacted by mail using their last known address in their medical record; interested subjects who received mailings returned a response card indicating their interest in study participation. These subjects were contacted by phone and completed the baseline interviews, and will be interviewed annually.

Results: 109 potential subjects were identified and contacted by mail, 50 subjects indicated an interest in participating; no response forms were returned which declined participation in the study.  Twenty-six potential subjects were not reachable due to out of date contact information and 8 subjects were deceased. To date, 41 subjects have completed the baseline interview. Median age is 24 years (range 18-30), median disease duration is 11 years (range 4-20). The cohort is 95% female, ethnicities include Caucasian (78%), Hispanic (15%) and other (7%). Sixty-eight percent of subjects reported a history of renal disease; 51% had a history of renal biopsy and 2 subjects had a renal transplant. Nine subjects (22%) reported a lupus flare in the 3 months prior to the baseline interview. Eleven (26%) of subjects reported an emergency room visit for their SLE within the past year, nine (22%) subjects were hospitalized. Eight-five percent of subjects rated their health as “excellent/very good/good” and 15% rated their health as “fair/poor.” Thirteen (32%) of subjects reported a lapse in insurance since turning 18, seven (17%) of subjects reported that this had a direct, negative impact on their health.

Conclusion: This abstract describes the successful establishment of a prospective longitudinal cohort of patients with cSLE as they enter adulthood. Such an inception cohort will permit the accurate estimation of the impact of biologic, socioeconomic, behavioral and access-to-care factors on disease outcomes over time.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/development-of-a-longitudinal-propective-cohort-of-young-adults-with-childhood-onset-systemic-lupus-erythematosus/