Felsenstein Susanna, Reiff Andreas O, Ramanathan Anusha
Children's Hospital Los Angeles, Los Angeles, California.
Children's Hospital Los Angeles and the Keck School of Medicine of the University of Southern California, Los Angeles, California.
Arthritis Care Res (Hoboken). 2015 Nov;67(11):1521-8. doi: 10.1002/acr.22611.
Transition 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.
A 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.
The mean ± SD 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).
The 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.
从儿科护理过渡到成人护理是一个复杂的过程，可能会对慢性病患者产生负面影响。我们描述了儿童期发病的系统性红斑狼疮（SLE）患者的过渡经历及其成年后的相关结局。
对41例儿童期发病的SLE患者向成人护理过渡后进行了电话调查。收集了过渡期间及之后的医疗和社会结局数据。将健康状况与儿童出院时回顾性收集的基线数据进行比较。
平均随访间隔为5±3.7年；随访时的平均年龄为24±4.2岁。超过一半的患者（41例中的22例）经历了过渡困难，主要原因是保险丧失和情绪调整问题，这与随访时症状控制不佳（P = 0.03）和多器官系统受累（P = 0.05）有关。过渡后，大多数患者（41例中的35例）由成人护理风湿病专家随访，大多数（41例中的37例）报告有近期活动性疾病症状；41%（29例中的13例）在过渡后出现了提示新的肾脏表现的症状。三分之一（41例中的15例）报告有新的或持续的神经精神症状。肾脏和神经精神表现均与失业有关（P < 0.05）。儿科风湿病专家直接转诊与过渡后住院次数减少有关（P = 0.04）。
大多数患者成功过渡到成人风湿病护理。主要挑战是保险丧失和对儿科医疗服务提供者的依赖，这凸显了一个结构化过渡过程的重要性，该过程侧重于提供情感和经济指导。儿童期发病的SLE在整个成年期疾病活动度仍然很高，发病率主要与肾脏和神经精神表现有关。
