Interdisciplinary care of children with trisomy 13 and 18

被引：18
|
作者：
Weaver, Meaghann S. [1 ,2 ]
Anderson, Venus [2 ,3 ]
Beck, Jill [2 ,4 ]
Delaney, Jeffrey W. [2 ,3 ]
Ellis, Cynthia [5 ,6 ]
Fletcher, Scott [2 ,3 ,7 ]
Hammel, James [2 ,8 ]
Haney, Suzanne [2 ,9 ]
Macfadyen, Andrew [2 ,10 ]
Norton, Bridget [2 ,10 ]
Rickard, Mary [11 ]
Robinson, Jeffrey A. [2 ,3 ]
Sewell, Ryan [2 ,12 ,13 ]
Starr, Lois [2 ,6 ,14 ]
Birge, Nicole D. [15 ]
机构：
[1] Childrens Hosp & Med Ctr, Dept Pediat, Div Palliat Care, Omaha, NE 68114 USA
[2] Univ Nebraska Med Ctr, Omaha, NE USA
[3] Childrens Hosp & Med Ctr, Dept Pediat, Div Cardiol, Omaha, NE 68114 USA
[4] Childrens Hosp & Med Ctr, Dept Pediat, Div Oncol, Omaha, NE 68114 USA
[5] Childrens Hosp & Med Ctr, Dept Pediat, Div Dev Pediat, Omaha, NE 68114 USA
[6] Munroe Meyer Inst Genet & Rehabil, Omaha, NE USA
[7] Creighton Univ, Dept Pediat, Div Cardiol, Omaha, NE 68178 USA
[8] Childrens Hosp & Med Ctr, Dept Surg, Div Cardiothorac Surg, Omaha, NE 68114 USA
[9] Childrens Hosp & Med Ctr, Dept Pediat, Div Child Advocacy, Omaha, NE 68114 USA
[10] Childrens Hosp & Med Ctr, Dept Pediat, Div Crit Care, Omaha, NE 68114 USA
[11] Childrens Hosp & Med Ctr, Dept Pediat, Div Neurol, Omaha, NE 68114 USA
[12] Childrens Hosp & Med Ctr, Dept Pediat, Div Otolaryngol, Omaha, NE 68114 USA
[13] ENT Specialists Pc, Omaha, NE USA
[14] Childrens Hosp & Med Ctr, Dept Pediat, Div Genet, Omaha, NE 68114 USA
[15] Childrens Hosp & Med Ctr, Dept Pediat, Div Neonatol, Omaha, NE 68114 USA
来源：
AMERICAN JOURNAL OF MEDICAL GENETICS PART A | 2021年 / 185卷 / 03期
关键词：
interdisciplinary care; palliative care; trisomy; 13; 18; EXTRACORPOREAL MEMBRANE-OXYGENATION; SHARED DECISION-MAKING; END-OF-LIFE; NATURAL-HISTORY; CARDIAC-SURGERY; EDWARDS-SYNDROME; PATAU SYNDROME; TUMOR PROFILE; SURVIVAL; MANAGEMENT;
D O I：
10.1002/ajmg.a.62051
中图分类号：
Q3 [遗传学];
学科分类号：
071007 ; 090102 ;
摘要：
Children with trisomy 13 and 18 (previously deemed "incompatible with life") are living longer, warranting a comprehensive overview of their unique comorbidities and complex care needs. This Review Article provides a summation of the recent literature, informed by the study team's Interdisciplinary Trisomy Translational Program consisting of representatives from: cardiology, cardiothoracic surgery, neonatology, otolaryngology, intensive care, neurology, social work, chaplaincy, nursing, and palliative care. Medical interventions are discussed in the context of decisional-paradigms and whole-family considerations. The communication format, educational endeavors, and lessons learned from the study team's interdisciplinary care processes are shared with recognition of the potential for replication and implementation in other care settings.
引用
收藏
页码：966 / 977
页数：12
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