Division of Pediatric Rheumatology, University of California, San Francisco, USA.
Division of Pediatric Rheumatology, University of Utah, Salt Lake City, USA.
Lupus. 2020 Sep;29(10):1206-1215. doi: 10.1177/0961203320938868. Epub 2020 Jul 8.
Individuals with childhood-onset systemic lupus erythematosus (cSLE) must transfer from pediatric to adult care. The goal of this study was to examine disease activity and health-care utilization among young adults with cSLE who are undergoing or have recently completed the transfer to adult care.
The Pediatric Lupus Outcomes Study (PLOS) is a prospective longitudinal cohort study of young adults aged 18-30 diagnosed with cSLE. We conducted a cross-sectional analysis comparing 47 participants under the care of pediatric rheumatologists to 38 who had completed transfer to adult care. Demographics, disease manifestations, health- care utilization and transition readiness were compared between groups.
Those in the post-transfer group had significantly lower medication usage and were less likely to have seen a rheumatologist in the past year. Disease manifestations, flare rates, and hospitalizations were similar between groups. Nearly a quarter of patients who had transferred to adult care reported difficulties with the process.
Post-transfer patients had lower health-care utilization as evidenced by less medication usage and lack of rheumatology follow-up, in spite of the fact that disease activity was similar in both groups. Future studies will assess longitudinal changes in disease activity and damage in this population.
儿童期起病的系统性红斑狼疮（cSLE）患者必须从儿科过渡到成人护理。本研究的目的是研究正在接受或最近完成向成人护理过渡的年轻 cSLE 患者的疾病活动度和医疗保健利用情况。
儿科狼疮结局研究（PLOS）是一项前瞻性纵向队列研究，纳入了 18-30 岁诊断为 cSLE 的年轻成年人。我们进行了一项横断面分析，比较了 47 名在儿科风湿病学家治疗下的参与者和 38 名已完成向成人护理过渡的参与者。比较了两组之间的人口统计学、疾病表现、医疗保健利用和过渡准备情况。
在过渡组中，药物使用明显减少，过去一年看风湿病医生的可能性较小。两组的疾病表现、发作率和住院率相似。近四分之一已转至成人护理的患者报告在过渡过程中遇到困难。
尽管两组的疾病活动度相似，但转至成人护理后的患者的医疗保健利用率较低，表现为药物使用减少且缺乏风湿病学随访。未来的研究将评估该人群疾病活动度和损伤的纵向变化。
