title: Evaluation of quality indicators and disease damage in childhood-onset systemic lupus erythematosus patients.
abstract: The aim of this study was to describe compliance with select quality indicators and assess organ-specific dysfunction in a childhood-onset systemic lupus erythematosus population by using a validated damage index and to evaluate associations between compliance with quality indicators and disease damage. A retrospective chart review was performed on patients diagnosed with systemic lupus erythematosus prior to age 18 followed at a single center in the USA from 1999 to 2012 (n = 75). Data regarding quality indicators and outcome variables, including the Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index, were collected. The median disease duration was 3.8 years. The proportion of patients or patient-years in which care complied with the proposed quality measures was 94.4% for hydroxychloroquine use, 84.3% for vitamin D recommendation,75.8% for influenza vaccination (patient-years), 67.2% for meningococcal vaccination, 49.0% for ophthalmologic examination (patient-years), 31.7% for pneumococcal vaccination, and 28.6% for bone mineral density evaluation. Disease damage was present in 41.3% of patients at last follow-up, with an average damage index score of 0.81. Disease damage at last follow-up was associated with minority race/ethnicity (p = 0.008), bone mineral density evaluation (p = 0.035), and vitamin D recommendation (p = 0.018). Adherence to quality indicators in a childhood-onset systemic lupus erythematosus population is varied, and disease damage is prevalent. This study highlights the importance of quality improvement initiatives aimed at optimizing care delivery to reduce disease damage in pediatric lupus patients.
authors.affiliation: Department of Pediatrics, Children's Mercy Kansas City, Kansas City, MO, USA. jgharris@cmh.edu.|University of Missouri - Kansas City School of Medicine, Kansas City, MO, USA. jgharris@cmh.edu.
authors.forename: Julia G
authors.initials: JG
authors.lastname: Harris
authors.affiliation: Department of Business Intelligence and Data Warehousing, Children's Hospital of Wisconsin, Milwaukee, WI, USA.
authors.forename: Kristyn I
authors.initials: KI
authors.lastname: Maletta
authors.affiliation: Department of Business Intelligence and Data Warehousing, Children's Hospital of Wisconsin, Milwaukee, WI, USA.
authors.forename: Evelyn M
authors.initials: EM
authors.lastname: Kuhn
authors.affiliation: Department of Pediatrics, Medical College of Wisconsin, Milwaukee, WI, USA.
authors.forename: Judyann C
authors.initials: JC
authors.lastname: Olson
mesh_terms: D000293:Adolescent; D002648:Child; D015331:Cohort Studies; D005260:Female; D006801:Humans; D006886:Hydroxychloroquine / Q000008:administration & dosage; D008180:Lupus Erythematosus, Systemic / Q000175:diagnosis* / Q000503:physiopathology* / Q000628:therapy; D008297:Male; D010349:Patient Compliance; D019984:Quality Indicators, Health Care; D011787:Quality of Health Care; D012189:Retrospective Studies; D012219:Rheumatology / Q000379:methods / Q000592:standards*; D012720:Severity of Illness Index; D016896:Treatment Outcome; D014807:Vitamin D / Q000008:administration & dosage
chemical_list: D014807:Vitamin D; D006886:Hydroxychloroquine
keywords: Disease damage; Outcomes; Quality indicators; Systemic lupus erythematosus