Achieving consensus on quality indicators (QI) for pediatric Systemic Lupus Erythematosus (pSLE)

Abstract

Background/Purpose: Quality Indicators (QI) are retrospectively measurable elements of practice performance for which there is evidence or consensus that can be used to assess the quality of care provided. Consensus-derived QI for pediatric systemic lupus erythematosus (pSLE) could serve as international benchmarks to assess the quality of patient care. By regularly monitoring adherence to QI in a clinical setting, targeted interventions may be implemented to improve the quality of medical care that patients with pSLE receive. Methods: Based on the medical literature, a Delphi survey was created and distributed to the physician membership of PRES, PANLAR, CARRA and the ACR via e-mail. Consensus was considered 80% agreement or higher. Results: There was consensus (97%) among the 297 respondents that simply applying QI developed by the ACR and EULAR for adults with SLE was insufficient and that distinct QI for pSLE were needed. Respondents concurred that 5 of the 20 ACR and 5 of the 23 EULAR adult QI are also suitable for pSLE in their current form (Table 1). An additional 14 ACR and 17 EULAR adult QI might be useful for pSLE after modifications. Consensus (>80% agreement) or near consensus (>70% agreement) was reached among respondents that all categories of adult QI are still useful for children with the exceptions of "Pregnancy" and "Reproductive Health," which achieved lower levels of agreement (Table 2). (Table presented) Conclusion: There is great demand among pediatric rheumatologists to develop QI for pSLE. Initial agreement has been reached about the types and domains of QI for pSLE, but additional discussion and consensus formation under consideration of the medical evidence is needed to finalize a set of QI for pSLE. This distinct set of QI could be used to define and improve standard of care treatment for children and adolescents with pSLE.