Harris Julia G, Maletta Kristyn I, Kuhn Evelyn M, Olson Judyann C
Department of Pediatrics, Children's Mercy Kansas City, Kansas City, MO, USA.
University of Missouri - Kansas City School of Medicine, Kansas City, MO, USA.
Clin Rheumatol. 2017 Feb;36(2):351-359. doi: 10.1007/s10067-016-3518-0. Epub 2016 Dec 24.
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.
本研究的目的是通过使用经过验证的损伤指数来描述儿童期起病的系统性红斑狼疮患者对选定质量指标的依从性，并评估器官特异性功能障碍，并评估质量指标依从性与疾病损伤之间的关联。对1999年至2012年在美国单一中心随访的18岁之前诊断为系统性红斑狼疮的患者进行了回顾性病历审查（n = 75）。收集了有关质量指标和结局变量的数据，包括系统性红斑狼疮国际协作诊所/美国风湿病学会损伤指数。疾病中位持续时间为3.8年。在使用羟氯喹的患者或患者年中，护理符合提议质量措施的比例为94.4%，维生素D推荐为84.3%，流感疫苗接种为75.8%（患者年），脑膜炎球菌疫苗接种为67.2%，眼科检查为49.0%（患者年），肺炎球菌疫苗接种为31.7%，骨密度评估为28.6%。在最后一次随访中，41.3%的患者存在疾病损伤，平均损伤指数评分为0.81。最后一次随访时的疾病损伤与少数族裔/种族（p = 0.008）、骨密度评估（p = 0.035）和维生素D推荐（p = 0.018）相关。儿童期起病的系统性红斑狼疮患者对质量指标的依从性各不相同，疾病损伤很普遍。本研究强调了旨在优化护理提供以减少儿科狼疮患者疾病损伤的质量改进举措的重要性。
