Special Low Protein Foods Prescribed in England for PKU Patients: An Analysis of Prescribing Patterns and Cost.

Publisher: MDPI Publishing Country of Publication: Switzerland NLM ID: 101521595 Publication Model: Electronic Cited Medium: Internet ISSN: 2072-6643 (Electronic) Linking ISSN: 20726643 NLM ISO Abbreviation: Nutrients Subsets: MEDLINE

Original Publication: Basel, Switzerland : MDPI Publishing

Diet, Protein-Restricted*/economics ; Practice Patterns, Physicians'*; Dietary Proteins/*analysis ; Foods, Specialized/*economics ; Phenylketonurias/*diet therapy ; State Medicine/*economics; Costs and Cost Analysis ; England ; Food Labeling ; Foods, Specialized/analysis ; Guidelines as Topic ; Humans

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.

J Hum Nutr Diet. 2014 Dec;27(6):533-41. (PMID: 24387232)
Mol Genet Metab. 2013 Jul;109(3):237-42. (PMID: 23731533)
Ann Nutr Metab. 2012;61(4):289-95. (PMID: 23208158)
Mol Genet Metab Rep. 2019 Oct 16;21:100523. (PMID: 31660292)
Nutrients. 2020 Oct 15;12(10):. (PMID: 33076399)
Mol Genet Metab. 2012 Sep;107(1-2):3-9. (PMID: 22854513)
Orphanet J Rare Dis. 2020 Jun 30;15(1):171. (PMID: 32605583)
Nutr Metab Cardiovasc Dis. 2017 Feb;27(2):176-182. (PMID: 28081989)
Pediatric Health Med Ther. 2016 Dec 01;7:155-163. (PMID: 29388626)
J Inherit Metab Dis. 2017 May;40(3):369-376. (PMID: 27832415)
Mol Genet Metab Rep. 2019 Mar 22;19:100466. (PMID: 30963029)
Orphanet J Rare Dis. 2015 Dec 22;10:162. (PMID: 26693706)
Mol Genet Metab Rep. 2019 Oct 25;21:100527. (PMID: 31709145)
Nutrients. 2020 Jun 25;12(6):. (PMID: 32630585)
Mol Genet Metab Rep. 2018 Oct 18;17:57-63. (PMID: 30364670)
Mol Genet Metab Rep. 2016 Aug 28;9:1-5. (PMID: 27622144)
Mol Genet Metab. 2012 Mar;105(3):390-4. (PMID: 22217429)
Int J Pediatr Adolesc Med. 2018 Jun;5(2):60-68. (PMID: 30805535)
Eur J Clin Nutr. 2018 Jan;72(1):87-92. (PMID: 28656971)
Orphanet J Rare Dis. 2017 Oct 12;12(1):162. (PMID: 29025426)

Keywords: England; costs; phenylketonuria; prescribing patterns; special low protein foods

0 (Dietary Proteins)

Date Created: 20211127 Date Completed: 20211217 Latest Revision: 20211217

20240513

PMC8620831

10.3390/nu13113977

34836232