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 |
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Hauptverfasser: | , , |
Format: | Artikel |
Sprache: | eng |
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Online-Zugang: | Volltext |
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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. |
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ISSN: | 1552-4825 1552-4833 |
DOI: | 10.1002/ajmg.a.37984 |