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Tags: treatment choice

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Choosing Between Medical Management and Liver Transplant in Urea Cycle Disorders - A Conceptual Framework for Parental Treatment Decision-Making in Rare Disease

BACKGROUND: Urea cycle disorders (UCD) are rare inherited metabolic disorders caused by deficiencies of enzymes and transporters required to convert neurotoxic ammonia into urea. These deficiencies cause elevated blood ammonia, which if untreated may…

Tags: 2019, Bartos J, Decision-making, February 2020 List, Gerstein M T, Gianattasio K Z, Journal Of Inherited Metabolic Disease, Le Mons C, liver transplant, Markus A R, Mew N A, Qualitative Research, Stevens D M, treatment choice, Urea Cycle Disorders

Predictors of Symptoms and Site of Death in Pediatric Palliative Patients With Cancer at End of Life

OBJECTIVE: To describe how preferences and treatment influence symptoms at end of life and site of death in pediatric cancer. METHODS: We included 61 pediatric palliative patients with cancer whose parents previously participated in a study that…

Tags: 2013, Alli A, Backlog, Bartels U, Cancer, Decision Making, End Of Life, Gillmeister Biljana, Journal Article, Schindera C, site of death, Sung L, The American Journal of Hospice & Palliative Care, Tomlinson D, treatment choice

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