| Outcomes beyond phenylalanine: an international perspective. | |
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MedLine Citation:
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PMID: 20123476 Owner: NLM Status: MEDLINE |
Abstract/OtherAbstract:
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Control of blood phenylalanine (Phe) levels throughout the life of a person diagnosed with phenylketonuria (PKU) is the biochemical management strategy necessary to provide the best potential for optimal outcome. Psychosocial support mechanisms comprise the other aspects of PKU management that are necessary to overcome the hurdles of living with this chronic disease and to adhere to the rigors of its management. Additional psychosocial support may be required, in light of increasing evidence that control of blood Phe levels in PKU can still lead to subtle but measurable cognitive function deficits as well as a predisposition to certain psychiatric symptoms and disorders. An all encompassing PKU management strategy that goes beyond simply treating blood Phe levels can empower and enable people born with PKU to achieve similar life goals as those born without PKU. This review looks at PKU management strategies that go beyond treating Phe levels, specifically (1) the roles psychologists play in managing PKU from infancy through adulthood and how they help PKU families and caregivers deal with the disease and the burden of its management; (2) understanding the challenges of transitioning into adulthood as an individual with PKU and addressing unmet needs in this population; (3) how non-traditional practices can be utilized in PKU. The objective is to emphasize that management of PKU goes well beyond addressing the biochemical nature of this disease in order to achieve optimal patient outcomes. |
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Authors:
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Francois Feillet; Anita MacDonald; Danielle Hartung Perron; Barbara Burton |
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Publication Detail:
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Type: Journal Article; Review |
Journal Detail:
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Title: Molecular genetics and metabolism Volume: 99 Suppl 1 ISSN: 1096-7206 ISO Abbreviation: Mol. Genet. Metab. Publication Date: 2010 |
Date Detail:
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Created Date: 2010-02-03 Completed Date: 2010-06-01 Revised Date: - |
Medline Journal Info:
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Nlm Unique ID: 9805456 Medline TA: Mol Genet Metab Country: United States |
Other Details:
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Languages: eng Pagination: S79-85 Citation Subset: IM |
Copyright Information:
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Copyright 2009 Elsevier Inc. All rights reserved. |
Affiliation:
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Reference Centre for Inborn Errors of Metabolism, INSERM U954, Department of Pediatrics, Children's Hospital of Nancy, All?e du Morvan, Vandoeuvre les Nancy 54500, France. f.feillet@chu-nancy.fr |
Export Citation:
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| MeSH Terms | |
Descriptor/Qualifier:
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Adolescent Child Child, Preschool Humans Infant Patient Compliance Phenylalanine / blood* Phenylketonurias / blood, diet therapy*, psychology Self Efficacy |
| Chemical | |
Reg. No./Substance:
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63-91-2/Phenylalanine |
From MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine
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