Initial benchmarking of the quality of medical care of childhood-onset systemic lupus erythematosus

Mina, R.; Harris, J. G.; Klein-Gitelman, M. S.; Appenzeller, S.; Centeville, M.; Eskra, D.; Huggins, J. L.; Johnson, A. L.; Khubchandani, R.; Khandekar, P.; Lee, J.; Liu, H.; Pendl, J. D.; Silva, C. A.; Silva, M. F.; Zaal, A. I.; DeWitt, E. M.; Ardoin, S. P.; Brunner, H. I.

Arthritis Care Res (Hoboken). 2015 Jul 30


OBJECTIVE: To assess the quality of medical care in childhood-onset systemic lupus erythematosus (cSLE) at tertiary pediatric rheumatology centers as measured by observance cSLE quality indicators (cSLE-QI). METHODS: International consensus has been achieved for cSLE-QI (Hollander et al. Arthritis Care & Research, 2013) capturing medical care provision in nine domains: diagnostic testing, education of cardiovascular (CV) risk and lifestyles, lupus nephritis (LN), medication management, bone health, ophthalmological surveillance, transition, pregnancy and vaccination. Using medical record information, the level of performance these cSLE-QI was assessed in cSLE populations treated at four tertiary pediatric rheumatology centers in the U.S, two in Brazil, and one center in India. RESULTS: A total of 483 cSLE patients were assessed. Care for the 310 U.S. patients differed markedly for cSLE-QI addressing LN, bone health, vaccinations, education on CV risk, and transition planning. Performance of safety blood testing for medications was high at all centers. Despite often similar performance on the cSLE-QI, access to kidney biopsies was lower in Brazil than in the U.S. Irrespective of country of practice, larger centers tended to meet the cSLE-QI more often than smaller centers. CONCLUSIONS: The cSLE-QI, evidence based minimum standards of medical care, are not consistently met in the U.S. or some other countries outside the U.S. This has the potential to contribute to suboptimal cSLE outcomes. This article is protected by copyright. All rights reserved.

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