Data di Pubblicazione:
2009
Citazione:
Dietary management practices in phenylketonuria across European centres / K. Ahring, A. Bélanger-Quintana, K. Dokoupil, H. Gokmen Ozel, A.M. Lammardo, A. MacDonald, K. Motzfeldt, M. Nowacka, M. Robert, M. van Rijn. - In: CLINICAL NUTRITION. - ISSN 0261-5614. - 28:3(2009 Jun), pp. 231-236.
Abstract:
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 ¼ 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.
Tipologia IRIS:
01 - Articolo su periodico
Keywords:
physician's practice patterns ; breast feeding ; diet ; dietary proteins ; Europe ; female ; health care surveys ; humans ; infant, newborn ; male ; neonatal screening; phenylalanine ; phenylketonurias ; practice guidelines as topic ; quality of health care ; questionnaires
Elenco autori:
K. Ahring, A. Bélanger-Quintana, K. Dokoupil, H. Gokmen Ozel, A.M. Lammardo, A. MacDonald, K. Motzfeldt, M. Nowacka, M. Robert, M. van Rijn
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