Son M B, Sergeyenko Y, Guan H, Costenbader K H
1 Division of Immunology, Boston Children's Hospital, Boston, MA, USA.
2 University of Miami Miller School of Medicine, Miami, FL, USA.
Lupus. 2016 Nov;25(13):1431-1439. doi: 10.1177/0961203316640913. Epub 2016 Jul 11.
Objective The chronicity and severity of childhood-onset systemic lupus erythematosus (cSLE) necessitate effective transition from pediatric to adult providers. We studied transition outcomes in a cSLE cohort. Methods We identified patients at an adult lupus clinic diagnosed with SLE ≤ 18 years who had been followed by a pediatric rheumatologist. Data extracted from the first three years in adult care ("post-transition period") included: sociodemographics, depression, anxiety, SLE manifestations, SLE Disease Activity Index (SLEDAI) and Systemic Lupus International Collaborating Clinics/ACR Damage Index for SLE (SLICC) scores, non-adherence, and gaps in care (no appointments in the recommended time frame). Multivariable logistic regression analyses for predictors of: (1) time between pediatric and adult providers, (2) gaps in care, (3) unscheduled utilization (emergency department visits and admissions) (4) depression and/or anxiety were performed, as was a multivariable Poisson regression analysis for number of missed appointments. Results In 50 patients, SLEDAI scores were stable (mean 5.7 ± 5.0 at start vs. 4.7 ± 4.8 at year 3, p = 0.2), but SLICC scores increased (0.46 ± 0.84, vs. 0.78 ± 1.25, p = 0.01). Depression and anxiety increased significantly (10% vs. 26%, p = 0.02). Mean time from last pediatric to first adult provider visit was almost nine months (253 ± 392 days). Nearly 75% of patients had ≥ 1 gap in care. White race, low education level and non-adherence were significantly associated with missed appointments. Conclusion Despite moderate disease activity in this cSLE transition cohort, prolonged time between pediatric and adult providers and gaps in care in the post-transition period occurred. Anxiety and depression were frequently reported. Future work should identify methods to improve transition.
目的 儿童期起病的系统性红斑狼疮（cSLE）的慢性病程和严重性使得从儿科医疗服务向成人医疗服务的有效过渡成为必要。我们研究了一个cSLE队列的过渡结果。方法 我们在一家成人狼疮诊所确定了诊断为SLE且年龄≤18岁、曾由儿科风湿病学家随访的患者。从成人护理的前三年（“过渡后期”）提取的数据包括：社会人口统计学、抑郁、焦虑、SLE表现、SLE疾病活动指数（SLEDAI）和系统性红斑狼疮国际协作诊所/美国风湿病学会SLE损伤指数（SLICC）评分、不依从情况以及护理缺口（在推荐时间范围内无预约）。对以下预测因素进行多变量逻辑回归分析：（1）儿科和成人医疗服务提供者之间的时间间隔，（2）护理缺口，（3）非计划利用情况（急诊科就诊和住院），（4）抑郁和/或焦虑，并对错过预约的次数进行多变量泊松回归分析。结果 在50例患者中，SLEDAI评分稳定（开始时平均为5.7±5.0，第3年时为4.7±4.8，p = 0.2），但SLICC评分升高（0.46±0.84，对比0.78±1.25，p = 0.01）。抑郁和焦虑显著增加（10%对比26%，p = 0.02）。从最后一次儿科就诊到首次成人医疗服务提供者就诊的平均时间近9个月（253±392天）。近75%的患者存在≥1个护理缺口。白人种族、低教育水平和不依从与错过预约显著相关。结论 尽管该cSLE过渡队列中的疾病活动程度中等，但儿科和成人医疗服务提供者之间的时间延长，且过渡后期存在护理缺口。焦虑和抑郁的报告较为频繁。未来的工作应确定改善过渡的方法。
