Background/Purpose: Juvenile systemic lupus erythematosus (jSLE) is a chronic disease associated with significant morbidity. Variability in the health maintenance-related management of these patients can contribute to suboptimal outcomes. International consensus quality indicators (QIs) were developed to guide management in SLE, with a subset focused on health maintenance and preventative care. We performed a retrospective chart review to assess adherence to the health maintenance-related QIs for jSLE in our clinic, with the goal of using this data to drive a quality improvement initiative to improve adherence.

Methods: A retrospective chart review was performed on patients with an active diagnosis of SLE followed in the pediatric rheumatology clinic at our institution from December 1, 2014 to April 30, 2016. Patients were included if they had a current active diagnosis of jSLE and were seen within the study period. Patients were excluded if they were no longer followed in our clinic, or received alternative diagnoses. Data were abstracted in a standardized database for analysis. To assess adherence to the health maintenance-related QIs, we calculated the percentage of patients who had documentation of performance of each measure, including: (a) Receiving antimalarial therapy (hydroxychloroquine) unless contraindicated; (b) Vaccination against influenza and encapsulated organisms; (c) Bone mineral testing; (d) Prescription for calcium and vitamin D supplementation for patients exposed to any glucocorticoid dose for longer than 3 months; (e) Annual ophthalmology evaluation; and (f) Serum lipid levels every 2 years.

Results: Sixty-six patients were identified with jSLE on initial screening, with 15 excluded based on criteria. We reviewed charts of the remaining 51 patients with an active diagnosis of jSLE seen during the study period. Mean age was 17 years (range 10-25) and 42 (83%) were female. Forty-nine (96%) were taking hydroxychloroquine. The 2 patients not taking had contraindications of allergy to medication and inability to take due to anxiety. 29 (57%) had documentation of the need for an annual ophthalmologic exam. 47 patients (92%) were on chronic steroid therapy, but only 13 (28%) were prescribed calcium and vitamin D. 7 (12%) had documentation of the necessary vaccinations and 7 (12%) had serum lipids checked within the last two years. None (0%) had bone mineral testing.

Conclusion: Adherence to the international consensus QIs for SLE in our pediatric rheumatology clinic varied considerably. Adherence was greatest for anti-malarial medication treatment and ophthalmology examination screening, and lowest for health maintenance-related measures of documentation of vaccination status, serum lipid level screening and bone mineral testing. This may reflect dissociation between routine jSLE disease management and preventive health maintenance activities. Accordingly, a standardized, system-based process that incorporates health maintenance-related activities into standard daily work may be necessary for improved adherence to recognized evidence-based QIs.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/adherence-to-the-international-consensus-quality-indicators-for-longitudinal-health-maintenance-and-preventative-care-in-a-pediatric-rheumatology-clinic/