Article Text
Abstract
Background/Purpose Achievement of a lupus low disease activity state (LLDAS) has been associated with less organ damage, fewer disease flares, and improved health-related quality of life in children with systemic lupus erythematosus (cSLE). No prior studies have evaluated the implementation of lupus disease activity measure collection in the real-world. Our objective was to evaluate the acceptability, appropriateness, and feasibility of implementing a Treat to Target strategy for lupus in the pediatric rheumatology clinic.
Methods The Pediatric Lupus Understanding Systems (PLUS) collaborative was formed consisting of 5 pediatric rheumatology sites located in children’s hospitals affiliated with academic medical centers in the United States. We operationalized the 5 cLLDAS criteria to collect at the point of care (table 1) with plans for implementation phase 1 to track collection of each criteria at cSLE visits on a monthly basis. We completed a baseline implementation assessment using the Acceptability of Intervention Measure, Intervention Appropriateness Measure, and Feasibility of Intervention Measure. Each measure consists of 4 domains assessed on a Likert scale of 1–5 (1=completely disagree to 5=completely agree). Mean response was calculated for each domain. Barriers to cLLDAS criteria collection were also identified.
Results We collected a baseline implementation assessment from each PLUS collaborative site leader (n=5). Sites reported a range of number of pediatric rheumatology providers (5–18), most had trainees in clinic, and 60% have mid-level providers (table 2). The approximate number of patients with cSLE seen in 2022 varied from 73–150 with a broad mix of insurance. All major electronic health record (EHR) vendors are represented. Implementing collection of cSLE disease activity measures and a Treat to Target strategy in the pediatric rheumatology clinic was largely found to be acceptable and appropriate (table 3). Scores for feasibility of the intervention were less positive. Themes of identified barriers to collection of cLLDAS criteria included: need for EHR adjustments to collect discrete data, availability of laboratory results to calculate disease activity during clinic visit, preexisting systems to collect physician global assessment on 0–10 scale, and physician burnout to change.
Conclusion Implementation of a treat to target approach to care of patients with cSLE is acceptable and appropriate although will require a dedicated effort to be feasible. A key determinant to monitoring real-world performance is ability to customize EHR with discrete data fields. Next steps are to use implementation facilitation via monthly meetings to improve performance from baseline.
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