title: Initial Benchmarking of the Quality of Medical Care in Childhood-Onset Systemic Lupus Erythematosus.
abstract: OBJECTIVE
  To assess the quality of medical care in childhood-onset systemic lupus erythematosus (SLE) at tertiary pediatric rheumatology centers as measured by observance of SLE quality indicators (SLE-QIs).
  
  
  METHODS
  International consensus has been achieved for childhood-onset SLE-QIs capturing medical care provision in 9 domains: diagnostic testing, education of cardiovascular (CV) risk and lifestyles, lupus nephritis (LN), medication management, bone health, ophthalmologic surveillance, transition, pregnancy, and vaccination. Using medical record information, the level of performance of these childhood-onset SLE-QIs was assessed in childhood-onset SLE populations treated at 4 tertiary pediatric rheumatology centers in the US, 2 in Brazil, and 1 center in India.
  
  
  RESULTS
  A total of 483 childhood-onset SLE patients were assessed. Care for the 310 US patients differed markedly for childhood-onset SLE-QIs 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 childhood-onset SLE-QI, access to kidney biopsies was lower in Brazil than in the US. Irrespective of the country of practice, larger centers tended to meet the childhood-onset SLE-QIs more often than smaller centers.
  
  
  CONCLUSIONS
  The childhood-onset SLE-QIs, evidence-based minimum standards of medical care, are not consistently met in the US or some other countries outside the US. This has the potential to contribute to suboptimal childhood-onset SLE outcomes.
authors.affiliation: Cincinnati Children's Hospital Medical Center and University of Cincinnati, Cincinnati, Ohio.
authors.forename: Rina
authors.initials: R
authors.lastname: Mina
authors.affiliation: Children's Mercy Hospitals and Clinics, Kansas City, Missouri.
authors.forename: Julia G
authors.initials: JG
authors.lastname: Harris
authors.affiliation: Lurie Children's Hospital, Chicago, Illinois.
authors.forename: Marisa S
authors.initials: MS
authors.lastname: Klein-Gitelman
authors.affiliation: State University of Campinas Unicamp, São Paulo, Brazil.
authors.forename: Simone
authors.initials: S
authors.lastname: Appenzeller
authors.affiliation: State University of Campinas Unicamp, São Paulo, Brazil.
authors.forename: Maraisa
authors.initials: M
authors.lastname: Centeville
authors.affiliation: Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
authors.forename: Diane
authors.initials: D
authors.lastname: Eskra
authors.affiliation: Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
authors.forename: Jennifer L
authors.initials: JL
authors.lastname: Huggins
authors.affiliation: Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
authors.forename: Anne L
authors.initials: AL
authors.lastname: Johnson
authors.affiliation: Jaslok Hospital and Research Center, Mumbai, India.
authors.forename: Raju
authors.initials: R
authors.lastname: Khubchandani
authors.affiliation: Jaslok Hospital and Research Center, Mumbai, India.
authors.forename: Prachi
authors.initials: P
authors.lastname: Khandekar
authors.affiliation: University of Cincinnati, Cincinnati, Ohio.
authors.forename: Jiha
authors.initials: J
authors.lastname: Lee
authors.affiliation: Children's Hospital of Fudan University, Shanghai, China.
authors.forename: Hai Mei
authors.initials: HM
authors.lastname: Liu
authors.affiliation: Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
authors.forename: Joshua D
authors.initials: JD
authors.lastname: Pendl
authors.affiliation: Universidade de São Paulo, Brazil.
authors.forename: Clovis A
authors.initials: CA
authors.lastname: Silva
authors.affiliation: Universidade de São Paulo, Brazil.
authors.forename: Marco F
authors.initials: MF
authors.lastname: Silva
authors.affiliation: Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
authors.forename: Ahmad I
authors.initials: AI
authors.lastname: Zaal
authors.affiliation: Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
authors.forename: Esi Morgan
authors.initials: EM
authors.lastname: DeWitt
authors.affiliation: Nationwide Children's Hospital and Ohio State University, Columbus, Ohio.
authors.forename: Stacy P
authors.initials: SP
authors.lastname: Ardoin
authors.affiliation: Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
authors.forename: Hermine I
authors.initials: HI
authors.lastname: Brunner
mesh_terms: D000293:Adolescent; D000328:Adult; D019985:Benchmarking; D005260:Female; D006801:Humans; D008180:Lupus Erythematosus, Systemic / Q000628:therapy*; D008297:Male; D019984:Quality Indicators, Health Care; D055815:Young Adult