Investigating the Role of Care Retention in Lupus Disease Outcomes and Disparities in Young Adult and Pediatric Patients

项目总结/摘要 系统性红斑狼疮（SLE）是一种终身的系统性自身免疫性疾病，影响150万人 美国人，20%的人从童年就受到影响。SLE是导致年轻人死亡的主要慢性疾病 妇女，特别是少数民族妇女。而少数民族和低社会经济地位的患者 状态（SES）的人患SLE的可能性是正常人的三倍，他们患SLE的可能性是正常人的七倍， 相关的肾脏疾病和过早死亡。虽然SLE中的一些差异可以从生物学上解释， 一项国际SLE患者队列研究发现，SLE损害风险仅在非洲后裔中较高， 美国，但不是其他10个发达国家。这一点，再加上低质量的护理和更少的发现， 在少数种族、民族和低SES的SLE患者中，医疗保健访问都表明SLE的重要作用 护理质量。随着时间的推移，患者继续接受提供者访视和实验室检查， 根据临床实践指南。护理保留率低与以下方面的差异和更差的结果有关： 艾滋病。青少年和年轻人在保持护理方面面临独特的挑战： 医疗保健;难以导航医疗保健系统，包括从儿科过渡到成人 供应商;正在进行的心理社会发展;和重大的生活转变。因此，较低的护理保留， 据报道，青少年和年轻人在HIV中也可能发生，也可能发生在SLE患者中。然而，在这方面， 尚未在年轻SLE患者中研究护理保留，也没有评估 在SLE年轻患者中观察到的过度死亡率的护理保留缺口，特别是在少数民族患者中 种族和民族。根据《国家营养与健康管理局战略计划》、《国家营养与健康管理局长期计划》和《 NIH狼疮行动计划，本研究的目的是评估护理保留和疾病结局差异 在年轻SLE患者中，研究护理保留差距在介导健康差异中的作用， 这些患者的临床结果不佳。使用国家医疗保险数据和CARRA儿科SLE患者 本研究提出三个目的：目的1）比较不同年龄的护理保留情况， 年轻人中的预测因子;目的2）检查住院率和无肾炎生存率， 在年轻人和少数种族/民族患者中，护理保留作为这些疾病结局的中介 和低SES;目的3）比较护理保留和无疾病并发症生存率和预测因子， 按年龄和差异分组的儿童和青少年SLE患者。这项研究的完成将 通过提供对年轻SLE患者护理保留的首次估计，指导未来的干预措施， 量化差异和护理差距，并将护理保留作为一个可改变的风险因素进行评估。拟议 研究还将支持MD/PhD培训，以促进候选人作为独立研究人员的发展。 研究儿科自身免疫性疾病差异的医生科学家， 关注并减少差距。

Project Summary/Abstract Systemic Lupus Erythematous (SLE) is a life-long systemic autoimmune condition that affects 1.5 million Americans, with 20% affected from childhood. SLE is a leading chronic disease cause of death in young women, particularly in minority women. While patients of minority race and ethnicity and of low socioeconomic status (SES) are three times more likely to develop SLE, they are seven times more likely to develop SLE- related kidney disease and premature mortality. While some differences in SLE may be biologically explained, an international cohort of SLE patients found that SLE damage risk was higher only in African descendants in the US, but not in 10 other developed countries. This, coupled with findings of lower-quality care and fewer healthcare visits in SLE patients of minority race, ethnicity, and low SES, all indicate an important role for SLE care quality. Care retention occurs over time as patients continue to have provider visits and laboratory tests per clinical practice guidelines. Low care retention has been associated with disparities and worse outcomes in HIV. Adolescents and young adults experience unique challenges to care retention: lower engagement with healthcare; difficulties navigating the healthcare system, including transitioning from pediatric to adult providers; on-going psychosocial development; and major life transitions. Thus, lower care retention in adolescents and young adults has been reported in HIV and likely also occurs in those with SLE. However, care retention has not been studied in young patients with SLE, nor has there been an evaluation of the role of care retention gaps in the excess mortality seen in young adults with SLE, particularly in patients of minority race and ethnicity. In alignment with goals in the NIMHD Strategic Plan, the NIAMS Long-Range Plan, and the NIH Lupus Action Plan, the objective of this study is to evaluate care retention and disease outcome disparities in young patients with SLE and to investigate the role of care retention gaps in mediating health disparities and poor clinical outcomes in these patients. Using national Medicare data and the CARRA pediatric SLE patient registry, this study proposes three aims: Aim 1) To compare care retention by age and determine retention predictors in young adults; Aim 2) To examine rates of hospitalization- and nephritis-free survival and evaluate care retention as a mediator of these disease outcomes in young adults and patients of minority race/ethnicity and low SES; Aim 3) To compare care retention and disease complication-free survival and predictors in pediatric and adolescent patients with SLE by age and disparities groups. Completion of this research will direct future interventions by providing the first estimates of care retention in young patients with SLE, quantifying disparities and care gaps, and evaluating care retention as a modifiable risk factor. The proposed research will also support MD/PhD training to forward the candidate's development as an independent physician scientist studying pediatric autoimmune disease disparities to develop interventions that improve care and reduce disparities.