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

项目摘要/摘要 系统性红斑狼疮(SLE)是一种终生的系统性自身免疫性疾病，影响150万人 美国人，其中20%的人受到童年的影响。系统性红斑狼疮是导致年轻人死亡的主要慢性疾病。 妇女，特别是少数族裔妇女。而少数族裔和低社会经济地位的患者 社会地位(SES)患SLE的可能性是普通人的三倍，患SLE的可能性是普通人的七倍。 相关的肾脏疾病和过早死亡。虽然系统性红斑狼疮的一些差异可以从生物学上解释， 一个国际系统性红斑狼疮患者队列发现，只有在#年的非洲后裔中，SLE损害风险更高 美国，但不是其他10个发达国家。这一点，再加上较低质量的医疗保健和更少的 少数族裔、民族和低SES的SLE患者的医疗就诊都表明SLE的重要作用 护理质量。随着患者继续接受提供者访问和实验室测试，护理保留会随着时间的推移而发生 根据临床实践指南。低护理保留率与差异和更差的结果相关 爱滋病毒。青少年和年轻人在护理保持方面遇到了独特的挑战：较低的参与度 医疗保健；在医疗保健系统中导航困难，包括从儿科过渡到成人 提供服务的人；持续的心理社会发展；以及重大的人生转变。因此，较低的护理保留率 据报道，青少年和年轻人感染了艾滋病毒，可能也发生在SLE患者中。然而， 还没有对年轻SLE患者的护理保持进行研究，也没有对 青壮年系统性红斑狼疮患者，特别是少数族裔患者超额死亡率的护理保留差距 种族和民族。与NIMHD战略计划、NIAMS长期计划和 NIH狼疮行动计划，这项研究的目的是评估护理保留和疾病结局差异 在年轻的SLE患者中，并调查护理保留差距在调节健康差距和 这些患者的临床结果很差。使用国家医疗保险数据和卡拉儿科SLE患者 这项研究提出了三个目标：目标1)比较不同年龄的护理保留率并确定保留率 年轻人的预测因素；目的2)检查住院和无肾炎的存活率，并评估 在年轻人和少数族裔患者中，护理保留是这些疾病结局的中介因素 和低SES；目的3)比较护理保留和无疾病并发症的生存率和预测因素 儿童和青少年系统性红斑狼疮患者按年龄和差异分组。完成这项研究将 通过提供对年轻SLE患者护理保留的第一次估计，指导未来的干预措施， 量化差异和护理差距，并将护理保留作为可修改的风险因素进行评估。建议数 研究还将支持医学博士/博士培训，以推动候选人的独立发展 内科科学家研究儿科自身免疫性疾病差异以开发改善干预措施 关心和缩小差距。

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.