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Dietary management practices in phenylketonuria across European centres

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Harvard

Ahring, K, Bélanger-Quintana, A, Dokoupil, K, Gokmen Ozel, H, Lammardo, AM, MacDonald, A, Motzfeldt, K, Nowacka, M, Robert, M & van Rijn, M 2009, 'Dietary management practices in phenylketonuria across European centres' Clinical nutrition (Edinburgh, Scotland), vol. 28, no. 3, pp. 231-6. https://doi.org/10.1016/j.clnu.2009.03.004

APA

Ahring, K., Bélanger-Quintana, A., Dokoupil, K., Gokmen Ozel, H., Lammardo, A. M., MacDonald, A., ... van Rijn, M. (2009). Dietary management practices in phenylketonuria across European centres. Clinical nutrition (Edinburgh, Scotland), 28(3), 231-6. https://doi.org/10.1016/j.clnu.2009.03.004

CBE

Ahring K, Bélanger-Quintana A, Dokoupil K, Gokmen Ozel H, Lammardo AM, MacDonald A, Motzfeldt K, Nowacka M, Robert M, van Rijn M. 2009. Dietary management practices in phenylketonuria across European centres. Clinical nutrition (Edinburgh, Scotland). 28(3):231-6. https://doi.org/10.1016/j.clnu.2009.03.004

MLA

Vancouver

Ahring K, Bélanger-Quintana A, Dokoupil K, Gokmen Ozel H, Lammardo AM, MacDonald A et al. Dietary management practices in phenylketonuria across European centres. Clinical nutrition (Edinburgh, Scotland). 2009 Jun;28(3):231-6. https://doi.org/10.1016/j.clnu.2009.03.004

Author

Ahring, Kirsten ; Bélanger-Quintana, Amaya ; Dokoupil, Katharina ; Gokmen Ozel, Hulya ; Lammardo, Anna Maria ; MacDonald, Anita ; Motzfeldt, Kristina ; Nowacka, Maria ; Robert, Martine ; van Rijn, Margreet. / Dietary management practices in phenylketonuria across European centres. In: Clinical nutrition (Edinburgh, Scotland). 2009 ; Vol. 28, No. 3. pp. 231-6.

Bibtex

@article{4757710765694b36a217d63b9797d174,
title = "Dietary management practices in phenylketonuria across European centres",
abstract = "BACKGROUND: Dietary phenylalanine restriction is the cornerstone of phenylketonuria (PKU) management. However, there are no European consensus guidelines for its optimal dietary care.METHODS: Detailed information on the routine dietary management of PKU was obtained from 10 European centres using structured questionnaires. Each centre was represented by one dietitian/nutritionist or physician (European Nutritionist Expert Panel).RESULTS: All centres screened for PKU within the first 10 days of life. PKU prevalence was highest in Turkey. The training, roles and responsibilities of dietitians and nutritionists varied widely; in some centres dietitians were responsible for managing the diet, while in others this was performed by a physician. There were marked differences in target blood phenylalanine concentrations, the dosages of protein substitutes, systems for allocating daily phenylalanine allowance, and the definition of foods that could be eaten without restriction ('free foods'). Eighty percent (n=8/10) of centres encouraged breastfeeding together with protein substitute in infants with PKU.CONCLUSIONS: Important differences exist among centres across Europe in the dietary management of PKU, and in support systems designed to assist patients in managing their diets. Further studies are needed to compare different dietary treatments with the aim of identifying best practice to optimise phenylalanine control and dietary adherence.",
keywords = "Breast Feeding, Diet, Dietary Proteins, Europe, Female, Health Care Surveys, Humans, Infant, Newborn, Male, Neonatal Screening, Phenylalanine, Phenylketonurias, Physician's Practice Patterns, Practice Guidelines as Topic, Quality of Health Care, Questionnaires",
author = "Kirsten Ahring and Amaya B{\'e}langer-Quintana and Katharina Dokoupil and {Gokmen Ozel}, Hulya and Lammardo, {Anna Maria} and Anita MacDonald and Kristina Motzfeldt and Maria Nowacka and Martine Robert and {van Rijn}, Margreet",
year = "2009",
month = "6",
doi = "10.1016/j.clnu.2009.03.004",
language = "English",
volume = "28",
pages = "231--6",
journal = "Clinical Nutrition, Supplement",
issn = "0261-5614",
publisher = "Elsevier BV",
number = "3",

}

RIS

TY - JOUR

T1 - Dietary management practices in phenylketonuria across European centres

AU - Ahring, Kirsten

AU - Bélanger-Quintana, Amaya

AU - Dokoupil, Katharina

AU - Gokmen Ozel, Hulya

AU - Lammardo, Anna Maria

AU - MacDonald, Anita

AU - Motzfeldt, Kristina

AU - Nowacka, Maria

AU - Robert, Martine

AU - van Rijn, Margreet

PY - 2009/6

Y1 - 2009/6

N2 - BACKGROUND: Dietary phenylalanine restriction is the cornerstone of phenylketonuria (PKU) management. However, there are no European consensus guidelines for its optimal dietary care.METHODS: Detailed information on the routine dietary management of PKU was obtained from 10 European centres using structured questionnaires. Each centre was represented by one dietitian/nutritionist or physician (European Nutritionist Expert Panel).RESULTS: All centres screened for PKU within the first 10 days of life. PKU prevalence was highest in Turkey. The training, roles and responsibilities of dietitians and nutritionists varied widely; in some centres dietitians were responsible for managing the diet, while in others this was performed by a physician. There were marked differences in target blood phenylalanine concentrations, the dosages of protein substitutes, systems for allocating daily phenylalanine allowance, and the definition of foods that could be eaten without restriction ('free foods'). Eighty percent (n=8/10) of centres encouraged breastfeeding together with protein substitute in infants with PKU.CONCLUSIONS: Important differences exist among centres across Europe in the dietary management of PKU, and in support systems designed to assist patients in managing their diets. Further studies are needed to compare different dietary treatments with the aim of identifying best practice to optimise phenylalanine control and dietary adherence.

AB - BACKGROUND: Dietary phenylalanine restriction is the cornerstone of phenylketonuria (PKU) management. However, there are no European consensus guidelines for its optimal dietary care.METHODS: Detailed information on the routine dietary management of PKU was obtained from 10 European centres using structured questionnaires. Each centre was represented by one dietitian/nutritionist or physician (European Nutritionist Expert Panel).RESULTS: All centres screened for PKU within the first 10 days of life. PKU prevalence was highest in Turkey. The training, roles and responsibilities of dietitians and nutritionists varied widely; in some centres dietitians were responsible for managing the diet, while in others this was performed by a physician. There were marked differences in target blood phenylalanine concentrations, the dosages of protein substitutes, systems for allocating daily phenylalanine allowance, and the definition of foods that could be eaten without restriction ('free foods'). Eighty percent (n=8/10) of centres encouraged breastfeeding together with protein substitute in infants with PKU.CONCLUSIONS: Important differences exist among centres across Europe in the dietary management of PKU, and in support systems designed to assist patients in managing their diets. Further studies are needed to compare different dietary treatments with the aim of identifying best practice to optimise phenylalanine control and dietary adherence.

KW - Breast Feeding

KW - Diet

KW - Dietary Proteins

KW - Europe

KW - Female

KW - Health Care Surveys

KW - Humans

KW - Infant, Newborn

KW - Male

KW - Neonatal Screening

KW - Phenylalanine

KW - Phenylketonurias

KW - Physician's Practice Patterns

KW - Practice Guidelines as Topic

KW - Quality of Health Care

KW - Questionnaires

U2 - 10.1016/j.clnu.2009.03.004

DO - 10.1016/j.clnu.2009.03.004

M3 - Journal article

VL - 28

SP - 231

EP - 236

JO - Clinical Nutrition, Supplement

JF - Clinical Nutrition, Supplement

SN - 0261-5614

IS - 3

ER -

ID: 45088205