Browse Items · Pediatric Palliative Care Library

Pediatric Palliative Care of a Transgender Adolescent

A 15-year-old patient with metastatic synovial sarcoma conveyed to his palliative care physician that his dying wish was to start gender-affirming hormone therapy. His medical team was able to identify resources to support both him and his family as…

Pediatric palliative care for metabolic diseases: 20-year epidemiological survey of outpatients at a Brazilian quaternary hospital

The interface between pediatric palliative care (PPC) and inborn metabolic diseases (IMD) remains incipient, though these conditions fill the state of art of complex chronic diseases, eligible to this health approach. We analyzed the medical records…

Dysphagia in Friedreich Ataxia

The objective of the study was to comprehensively characterise dysphagia in Friedreich ataxia (FRDA) and identify predictors of penetration/aspiration during swallowing. We also investigated the psychosocial impact of dysphagia on individuals with…

Observations on Huntington's Chorea in Childhood

Work, knowledge and argument in specialist consultations: incorporating tacit knowledge into system design and development

To understand how video telephone technology could support consultations between pathologists and surgeons, this study looked at what constitutes 'work' in clinical consultations. Using several methods (participant observation, video and interviews),…

Tags: 1993, Backlog, Clinical, Communication, Hospital, Humans, Interprofessional Relations, Journal Article, Medical & Biological Engineering & Computing, Medical Staff, Non-U.S. Gov't, Nyce JM, Pathology, Research Support, Surgery, Timpka T

Surgical Intervention In Trisomy 18-supporting Pallative Care

Aims Patients with Trisomy 18 have a poor prognosis-only 5%-10% of children survive beyond the first year; however various clinical features of Trisomy 18 such as gastrointestinal, cardiac and central nervous system anomalies may benefit from…

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