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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| container_end_page | 815 |
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| container_issue | 3 |
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| container_title | American journal of medical genetics. Part A |
| container_volume | 173 |
| creator | Chung, Duc Haynes, Kristina Haynes, Russell |
| description | 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. |
| doi_str_mv | 10.1002/ajmg.a.37984 |
| format | Article |
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| fulltext | fulltext |
| identifier | ISSN: 1552-4825 |
| ispartof | American journal of medical genetics. Part A, 2017-03, Vol.173 (3), p.813-815 |
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| language | eng |
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| source | MEDLINE; Wiley Online Library Journals Frontfile Complete |
| subjects | Child, Preschool Chromosome Disorders - epidemiology Chromosome Disorders - mortality Chromosome Disorders - therapy Chromosomes, Human, Pair 13 Health Personnel Hospice care Humans Infant Infant, Newborn Interdisciplinary Communication Medical prognosis Palliation Palliative Care Parents Patau's syndrome Quality of life Trisomy Trisomy 13 Syndrome |
| title | Surviving with trisomy 13: Provider and parent perspectives and the role of the pediatric palliative care program |
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