Procedures in the 1st year of life for children with trisomy 13 and trisomy 18, a 25‐year, single‐center review
Procedures in the 1st year of life for children with trisomy 13 and trisomy 18, a 25‐year, single‐center review
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13 三体和 18 三体儿童出生后第一年的手术，25 年单中心回顾
DOI：
10.1002/ajmg.c.31525
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发表时间：
2016
期刊：
影响因子：
--
通讯作者：
C. Cibulskis
中科院分区：
文献类型：
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作者：
J. Josephsen;E. Armbrecht;S. Braddock;C. Cibulskis
在过去的几十年里，对出生时患有13或18三体的孩子的护理已经发生了变化，导致了医疗保健利用率的提高。我们假设，所有强度类型的手术都有所增加，包括主要的侵入性手术。从1990年到2014年，我们在一家独立的第四级儿童医院对患有13或18三体的儿童进行了一项回顾性队列研究。儿童使用ICD-9计费诊断进行识别。在这些接触过程中确定了程序，并根据强度(主要、中等或次要)进行分类。132名患有13或18三体的儿童被确认。在13三体儿童中，主要手术从第一阶段(1990-1997年)增加到第三阶段(2006-2013年)，从每名患者0.11次手术增加到0.78次。对于18三体，每个患者的时间间隔增加从0.14次增加到1.33次。到研究结束时，几乎所有的13三体患者都接受了大手术，而18三体患者中的大多数都接受了大手术。13号三体和18号三体患者接受大手术的1年生存率估计分别为30%和22%。总而言之，在25年的研究期间，所有强度水平的每个患者的手术比率都在增加。鉴于13和18三体患者的特征不同，以及干预对生存的影响，父母和医疗保健提供者应该采用个性化的方法来照顾这些患者，使用三体类型、婴儿性别、共病和父母偏好等因素。©2016 Wiley期刊，Inc.
Care of the child born with trisomy 13 or 18 has evolved over the past few decades, leading to increased healthcare utilization. We hypothesized that there has been an increase in procedures across all intensity types, including major, invasive procedures. We performed a retrospective‐cohort study of children with trisomy 13 or 18 from 1990 to 2014 in a quaternary, free‐standing children's hospital. Children were identified using ICD‐9 billing diagnoses. Procedures were identified during these encounters and categorized by intensity (major, intermediate, or minor). One hundred thirty‐two children with trisomy 13 or 18 were identified. In children with trisomy 13, major procedures increased from period 1 (1990–1997) to period 3 (2006–2013) from 0.11 to 0.78 procedures per patient. For trisomy 18, the increase between the time periods was from 0.14 to 1.33 procedures per patient. By the end of the study period, nearly all trisomy 13 patients had a major procedure and the majority of those with trisomy 18 had undergone a major procedure. Estimated 1‐year survival for those with a major procedure was 30% and 22% for trisomies 13 and 18, respectively. In conclusion, there was an increasing rate of procedures per patient of all intensity levels over the 25‐year study period. Given differences in characteristics in those with trisomies 13 and 18, and effects of intervention on survival, an individualized approach to care of these patients should be employed by parents and healthcare providers, using factors such as trisomy type, infant gender, co‐morbidities, and parental preference. © 2016 Wiley Periodicals, Inc.