Transition of Care and Health-Related Outcomes in Pediatric-Onset Systemic Lupus Erythematosus
Transition of Care and Health-Related Outcomes in Pediatric-Onset Systemic Lupus Erythematosus
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DOI：
10.1002/acr.22611
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发表时间：
2015-11-01
影响因子：
4.7
通讯作者：
Ramanathan, Anusha
中科院分区：
文献类型：
--
作者：
Felsenstein, Susanna;Reiff, Andreas O.;Ramanathan, Anusha
从儿科到成人护理的过渡是一个复杂的过程，可能会对慢性病患者产生负面影响。我们描述了过渡的经验，儿童发病的系统性红斑狼疮（SLE）患者及其相关的成果adultory.MethodsA电话调查的41名儿童发病的SLE患者进行了过渡到成人护理。收集了转型期间和转型之后的医疗和社会成果数据。健康状况进行了比较，回顾性收集的基线数据在pediatric discharge.ResultsThe平均SD随访间隔为5 +/- 3.7年，平均+/- SD随访年龄为24 +/- 4.2年。超过一半的患者（41例中的22例）经历了过渡困难，主要是由于失去保险和情绪调整，这与随访时症状控制不良（P=0.03）和多器官系统受累（P=0.05）相关。过渡后，大多数患者（41例中的35例）由成人护理风湿病学家随访，大多数（41例中的37例）报告了近期活动性疾病的症状; 41%（29例中的13例）在过渡后出现了提示新肾脏表现的症状。三分之一（15/41）报告了新发或持续的神经精神症状。肾脏和神经精神症状与失业有关（P < 0.05）。直接转介的儿科风湿病学家与较少的住院治疗后的过渡（P=0.04）。结论大多数患者成功过渡到成人风湿病护理。主要的挑战是失去保险和依恋儿科提供者，突出了结构化的过渡过程，重点是提供情感和财务指导的重要性。儿童期SLE的疾病活动性在整个成年期仍然很高，发病率主要与肾脏和神经精神症状有关。
ObjectiveTransition from pediatric to adult care is a complex process and can negatively impact patients with chronic disease. We describe the transition experience of patients with pediatric-onset systemic lupus erythematosus (SLE) and its associated outcomes in adulthood.MethodsA telephone survey of 41 pediatric-onset SLE patients was conducted following their transition to adult care. Data on medical and social outcomes during and after the transition were collected. Health status was compared to retrospectively collected baseline data at pediatric discharge.ResultsThe meanSD followup interval was 5 +/- 3.7 years; the mean +/- SD age at followup was 24 +/- 4.2 years. More than half of patients (22 of 41) experienced transition difficulties, primarily due to loss of insurance and emotional readjustment, which were associated with poor symptom control (P=0.03) and multiple organ system involvement (P=0.05) at followup. After the transition, most patients (35 of 41) were followed by an adult-care rheumatologist, and the majority (37 of 41) reported recent symptoms of active disease; 41% (13 of 29) had developed symptoms suggestive of new renal manifestations following transition. One-third (15 of 41) reported new or ongoing neuropsychiatric symptoms. Both renal and neuropsychiatric manifestations were associated with unemployment (P < 0.05). Direct referral by a pediatric rheumatologist was associated with fewer hospitalizations following transition (P=0.04).ConclusionThe majority of patients transitioned successfully to adult rheumatologic care. Major challenges were loss of insurance and attachment to pediatric providers, highlighting the importance of a structured transition process that focuses on providing emotional and financial guidance. Disease activity in pediatric-onset SLE remains high throughout adulthood, with morbidity primarily related to renal and neuropsychiatric manifestations.