Surviving with trisomy 13: Provider and parent perspectives and the role of the pediatric palliative care program

Trisomy 13 typically denotes an overall poor prognosis in the setting of multisystem anomalies. Through a provider and parent perspective, this case illustrates the benefit of hope, communication, and teamwork through the integration of a palliative care team in the care of a medically complex child...

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Veröffentlicht in:American journal of medical genetics. Part A 2017-03, Vol.173 (3), p.813-815
Hauptverfasser: Chung, Duc, Haynes, Kristina, Haynes, Russell
Format: Artikel
Sprache:eng
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Zusammenfassung:Trisomy 13 typically denotes an overall poor prognosis in the setting of multisystem anomalies. Through a provider and parent perspective, this case illustrates the benefit of hope, communication, and teamwork through the integration of a palliative care team in the care of a medically complex child with trisomy 13, resulting in enhance survival and perceived quality of life for patient and family. © 2016 Wiley Periodicals, Inc.
ISSN:1552-4825
1552-4833
DOI:10.1002/ajmg.a.37984