Cultural aspects in the management of inborn errors of metabolism.

Journal of Inherited Metabolic Disease
Sylvia StocklerOsman S Ipsiroglu

Abstract

European Health Care Systems have not yet accommodated both previous and current migration waves. Children from immigrant families, especially children with chronic conditions, are particularly affected from the shortcomings in medical care. One condition, phenylketonuria (PKU), is an inborn error of metabolism (IEM) which results in intellectual disability unless treated with a lifelong phenylalanine (Phe) restricted diet. In our PKU clinic, patients from families who previously had emmigrated from the geographic area of Turkey to Austria, exhibited worse blood Phe control and cognitive development than comparable patients from native Austrian families. Using structured and semi-structured interviews, questionnaires, and illness narratives, we identified language, psychosocial, economic, educational and cultural barriers as factors influencing adherence to treatment. Our findings led us to conclude that access to interpreter services, exploration of the socio-cultural background and of family ecology, as well as bi-directional communication and medical decision making according to the "best interest of the child" principle, may improve outcomes in patients requiring complex treatment and care.

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Citations

Mar 9, 2013·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Susan A BerryStephen Cederbaum
Mar 8, 2013·Molecular Genetics and Metabolism·Carol HartnettSylvia Stockler-Ipsiroglu
Jan 11, 2016·Molecular Genetics and Metabolism·Gloria HoClara D M van Karnebeek
Mar 7, 2013·Pediatrics International : Official Journal of the Japan Pediatric Society·Tuba F EminogluAlev Hasanoglu
Oct 2, 2012·Molecular Genetics and Metabolism·Clara D M van KarnebeekSylvia Stockler
May 24, 2016·Molecular Genetics and Metabolism·Rani H SinghFrances Rohr
Feb 3, 2015·Current Treatment Options in Neurology·Clara D M van Karnebeek, Sravan Jaggumantri
Jan 20, 2018·Journal of Inherited Metabolic Disease·Tatiana YuzyukNicola Longo
Jan 1, 2017·Expert Review of Endocrinology & Metabolism·Izabella Agostinho PenaClara D M Van Karnebeek

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