Special low protein foods prescribed in england for pku patients: An analysis of prescribing patterns and cost

Georgina Wood, Alex Pinto, Sharon Evans, Anne Daly, Sandra Adams, Susie Costelloe, Joanna Gribben, Charlotte Ellerton, Anita Emm, Sarah Firman, Suzanne Ford, Moira French, Lisa Gaff, Emily Giuliano, Melanie Hill, Inderdip Hunjan, Camille Newby, Allison Mackenzie, Rachel Pereira, Celine PrescottLouise Robertson, Heidi Seabert, Rachel Skeath, Simon Tapley, Allyson Terry, Alison Tooke, Karen van Wyk, Fiona J. White, Lucy White, Alison Woodall, Júlio César Rocha, Anita Macdonald

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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 (n = 142) were examined. Their costs in comparison to regular protein-containing (n = 182) and ‘free-from’ products (n = 135) were also analysed. Similar foods were grouped into subgroups (n = 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 (n = 39/40) were more expensive than regular and ‘free-from’ 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.

Original languageEnglish
Article number3977
Issue number11
Publication statusPublished - Nov 2021


  • Costs
  • England
  • Phenylketonuria
  • Prescribing patterns
  • Special low protein foods


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