TY - JOUR
T1 - Interdisciplinary care of children with trisomy 13 and 18
AU - Weaver, Meaghann S.
AU - Anderson, Venus
AU - Beck, Jill
AU - Delaney, Jeffrey W.
AU - Ellis, Cynthia
AU - Fletcher, Scott
AU - Hammel, James
AU - Haney, Suzanne
AU - Macfadyen, Andrew
AU - Norton, Bridget
AU - Rickard, Mary
AU - Robinson, Jeffrey A.
AU - Sewell, Ryan
AU - Starr, Lois
AU - Birge, Nicole D.
N1 - Publisher Copyright:
© 2020 Wiley Periodicals LLC
PY - 2021/3
Y1 - 2021/3
N2 - 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.
AB - 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.
KW - interdisciplinary care
KW - palliative care
KW - trisomy 13
KW - trisomy 18
UR - http://www.scopus.com/inward/record.url?scp=85098333812&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85098333812&partnerID=8YFLogxK
U2 - 10.1002/ajmg.a.62051
DO - 10.1002/ajmg.a.62051
M3 - Review article
C2 - 33381915
AN - SCOPUS:85098333812
SN - 1552-4825
VL - 185
SP - 966
EP - 977
JO - American Journal of Medical Genetics, Part A
JF - American Journal of Medical Genetics, Part A
IS - 3
ER -