Chung Duc, Haynes Kristina, Haynes Russell
Department of Hospice and Palliative Medicine, UCSF Fresno, Fresno, California.
UCSF Benioff Children's Hospital, San Francisco, California.
Am J Med Genet A. 2017 Mar;173(3):813-815. doi: 10.1002/ajmg.a.37984. Epub 2016 Dec 25.
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.
13三体综合征在多系统异常的情况下通常预示着总体预后不良。从医护人员和患儿家长的角度来看,本病例说明了通过整合姑息治疗团队来护理患有13三体综合征的病情复杂儿童时,希望、沟通和团队合作所带来的益处,从而提高了患儿及其家庭的生存率和生活质量感受。© 2016威利期刊公司