Mina Rina, Harris Julia G, Klein-Gitelman Marisa S, Appenzeller Simone, Centeville Maraisa, Eskra Diane, Huggins Jennifer L, Johnson Anne L, Khubchandani Raju, Khandekar Prachi, Lee Jiha, Liu Hai Mei, Pendl Joshua D, Silva Clovis A, Silva Marco F, Zaal Ahmad I, DeWitt Esi Morgan, Ardoin Stacy P, Brunner Hermine I
Cincinnati Children's Hospital Medical Center and University of Cincinnati, Cincinnati, Ohio.
Children's Mercy Hospitals and Clinics, Kansas City, Missouri.
Arthritis Care Res (Hoboken). 2016 Feb;68(2):179-86. doi: 10.1002/acr.22666.
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).
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.
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.
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.
通过观察系统性红斑狼疮质量指标（SLE-QIs）来评估三级儿科风湿病中心儿童期起病的系统性红斑狼疮（SLE）的医疗质量。
已就儿童期起病的SLE-QIs达成国际共识，这些指标涵盖9个医疗护理领域：诊断检测、心血管（CV）风险和生活方式教育、狼疮性肾炎（LN）、药物管理、骨骼健康、眼科监测、转诊、妊娠和疫苗接种。利用病历信息，在美国4家三级儿科风湿病中心、巴西2家以及印度1家中心接受治疗的儿童期起病的SLE患者群体中，评估这些儿童期起病的SLE-QIs的执行水平。
共评估了483例儿童期起病的SLE患者。对于涉及LN、骨骼健康、疫苗接种、CV风险教育和转诊规划的儿童期起病的SLE-QIs，310例美国患者的护理情况存在显著差异。所有中心的药物安全血液检测执行情况都很高。尽管在儿童期起病的SLE-QI上表现往往相似，但巴西进行肾脏活检的机会低于美国。无论在哪个国家开展业务，大型中心往往比小型中心更常达到儿童期起病的SLE-QIs标准。
儿童期起病的SLE-QIs作为循证的医疗护理最低标准，在美国或美国以外的其他一些国家并未得到一致遵循。这有可能导致儿童期起病的SLE出现次优结局。
