Patients with phenylketonuria (PKU) are reliant on special low protein foods (SLPFs) as part of their dietary treatment. In England, several issues regarding the accessibility of SLPFs through the national prescribing system have been highlighted. Therefore, prescribing patterns and expenditure on all SLPFs available on prescription in England ( = 142) were examined. Their costs in comparison to regular protein-containing ( = 182) and products ( = 135) were also analysed. Similar foods were grouped into subgroups ( = 40). The number of units and costs of SLPFs prescribed in total and per subgroup from January to December 2020 were calculated using National Health Service (NHS) Business Service Authority (NHSBSA) ePACT2 (electronic Prescribing Analysis and Cost Tool) for England. Monthly patient SLPF units prescribed were calculated using patient numbers with PKU and non-PKU inherited metabolic disorders (IMD) consuming SLPFs. This was compared to the National Society for PKU (NSPKU) prescribing guidance. Ninety-eight percent of SLPF subgroups ( 39/40) were more expensive than regular and food subgroups. However, costs to prescribe SLPFs are significantly less than theoretical calculations. From January to December 2020, 208,932 units of SLPFs were prescribed (excluding milk replacers), costing the NHS £2,151,973 (including milk replacers). This equates to £962 per patient annually, and prescribed amounts are well below the upper limits suggested by the NSPKU, indicating under prescribing of SLPFs. It is recommended that a simpler and improved system should be implemented. Ideally, specialist metabolic dietitians should have responsibility for prescribing SLPFs. This would ensure that patients with PKU have the necessary access to their essential dietary treatment, which, in turn, should help promote dietary adherence and improve metabolic control.
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http://dx.doi.org/10.3390/nu13113977 | DOI Listing |
Nutrients
August 2023
Nutrition, Food Science and Gastronomy Department, Xarxa d'Innovació Alimentària (XIA), Faculty of Pharmacy and Food Science, Food Science and Nutrition Torribera Campus, University of Barcelona, Av. Prat de la Riba 171, 08921 Santa Coloma de Gramenet, Barcelona, Spain.
In inborn errors of intermediate protein metabolism (IEM), the effect of special low-protein foods (SLPFs) on dietary intake has been scarcely studied. The aim of this study was to compare the nutritional profile of SLPFs with usual foods and to assess whether their intake determines the dietary pattern and affects the plasma biochemical profile in children with IEMs with different protein restrictions. A database with the nutritional composition of 250 SLPFs was created.
View Article and Find Full Text PDFNutr Health
December 2024
Department of Pediatrics, Istanbul University, Istanbul Faculty of Medicine, Istanbul, Turkey.
Special low protein foods (SLPF) that are phenylalanine (Phe)-free or have a low Phe content are an integral part of PKU diet therapy. The aim of this study is to determine the nutritional profiles of SLPFs used in Turkey and to compare their contents with equivalent products in the "regular" category, in order to evaluate nutritional and metabolic risks. Between February and March 2022, the information concerning the nutritional contents of "special low protein products" recommended for PKU and available in Turkey were obtained from the websites of producers/suppliers.
View Article and Find Full Text PDFNutrients
November 2021
Dietetic Department, Birmingham Women's and Children's Hospital, Steelhouse Lane, Birmingham B4 6NH, UK.
Patients with phenylketonuria (PKU) are reliant on special low protein foods (SLPFs) as part of their dietary treatment. In England, several issues regarding the accessibility of SLPFs through the national prescribing system have been highlighted. Therefore, prescribing patterns and expenditure on all SLPFs available on prescription in England ( = 142) were examined.
View Article and Find Full Text PDFNutrients
October 2020
Dietetic Department, Birmingham Children's Hospital, Steelhouse Lane, Birmingham B4 6NH, UK.
Unlabelled: The nutritional composition of special low protein foods (SLPFs) is controlled under EU legislation for 'Foods for Special Medical Purposes (FSMP)'. They are designed to meet the energy needs of patients unable to eat a normal protein containing diet. In phenylketonuria (PKU), the macronutrient contribution of SLPFs has been inadequately examined.
View Article and Find Full Text PDFNutrients
June 2020
Birmingham Women's and Children's NHS Foundation Trust, Steelhouse Lane, Birmingham B4 6NH, UK.
Special low protein foods (SLPFs) are essential in a low phenylalanine diet for treating phenylketonuria (PKU). With little known about their nutritional composition, all SLPFs on UK prescription were studied ( = 146) and compared to equivalent protein-containing foods ( = 190). SLPF nutritional analysis was obtained from suppliers/manufacturers.
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