{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,18]],"date-time":"2026-08-18T05:00:37Z","timestamp":1787029237081,"version":"build-2736575974"},"reference-count":18,"publisher":"MDPI AG","issue":"11","license":[{"start":{"date-parts":[[2021,10,28]],"date-time":"2021-10-28T00:00:00Z","timestamp":1635379200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Nutrients"],"abstract":"<jats:p>Children spend a substantial part of their childhood in school, so provision of dietary care and inclusion of children with phenylketonuria (PKU) in this setting is essential. There are no reports describing the dietary support children with PKU receive whilst at school. The aim of this cross-sectional study was to explore the experiences of the dietary management of children with PKU in schools across the UK. Data was collected using an online survey completed by parents\/caregivers of children with PKU. Of 159 questionnaire responses, 92% (n = 146) of children attended state school, 6% (n = 10) private school and 2% (n = 3) other. Fourteen per cent (n = 21\/154) were at nursery\/preschool, 51% (n = 79\/154) primary and 35% (n = 54\/154) secondary school. Sixty-one per cent (n = 97\/159) said their child did not have school meals, with some catering services refusing to provide suitable food and some parents distrusting the school meals service. Sixty-one per cent of children had an individual health care plan (IHCP) (n = 95\/155). Children were commonly unsupervised at lunchtime (40%, n = 63\/159), with snacks (46%, n = 71\/155) and protein substitute (30%, n = 47\/157), with significantly less supervision in secondary than primary school (p &lt; 0.001). An IHCP was significantly associated with improved supervision of food and protein substitute administration (p &lt; 0.01), and better communication between parents\/caregivers and the school team (p &lt; 0.05). Children commonly accessed non-permitted foods in school. Therefore, parents\/caregivers described important issues concerning the school provision of low phenylalanine food and protein substitute. Every child should have an IHCP which details their dietary needs and how these will be met safely and discreetly. It is imperative that children with PKU are supported in school.<\/jats:p>","DOI":"10.3390\/nu13113863","type":"journal-article","created":{"date-parts":[[2021,10,28]],"date-time":"2021-10-28T23:51:36Z","timestamp":1635465096000},"page":"3863","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Provision and Supervision of Food and Protein Substitute in School for Children with PKU: Parent Experiences"],"prefix":"10.3390","volume":"13","author":[{"given":"Hannah","family":"Jones","sequence":"first","affiliation":[{"name":"Faculty of Health, Education & Life Sciences, Birmingham City University: City South Campus, Westbourne Road, Edgbaston, Birmingham B15 3TN, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alex","family":"Pinto","sequence":"additional","affiliation":[{"name":"Birmingham Women\u2019s and Children\u2019s NHS Foundation Trust, Steelhouse Lane, Birmingham B4 6NH, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sharon","family":"Evans","sequence":"additional","affiliation":[{"name":"Birmingham Women\u2019s and Children\u2019s NHS Foundation Trust, Steelhouse Lane, Birmingham B4 6NH, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Suzanne","family":"Ford","sequence":"additional","affiliation":[{"name":"National Society for Phenylketonuria, Sheffield S12 9ET, UK"},{"name":"North Bristol NHS Trust, Southmead Road, Bristol BS10 5NB, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mike","family":"O\u2019Driscoll","sequence":"additional","affiliation":[{"name":"School of Health and Education, Middlesex University, Room WG41A (Williams Building), The Burroughs Hendon, London NW4 4BT, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sharon","family":"Buckley","sequence":"additional","affiliation":[{"name":"Department of Psychology, Faculty of Health, Psychology and Social Care, Manchester Campus, Manchester Metropolitan University, 53 Bonsall Street, Manchester M15 6GX, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Catherine","family":"Ashmore","sequence":"additional","affiliation":[{"name":"Birmingham Women\u2019s and Children\u2019s NHS Foundation Trust, Steelhouse Lane, Birmingham B4 6NH, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2579-8699","authenticated-orcid":false,"given":"Anne","family":"Daly","sequence":"additional","affiliation":[{"name":"Birmingham Women\u2019s and Children\u2019s NHS Foundation Trust, Steelhouse Lane, Birmingham B4 6NH, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anita","family":"MacDonald","sequence":"additional","affiliation":[{"name":"Birmingham Women\u2019s and Children\u2019s NHS Foundation Trust, Steelhouse Lane, Birmingham B4 6NH, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2021,10,28]]},"reference":[{"key":"ref_1","unstructured":"Newborn Blood Spot Screening Programme in the UK (2021, August 10). Data collection and performance analysis report 2016 to 2017. Public Health England leads the NHS Screening Programmes, Available online: https:\/\/assets.publishing.service.gov.uk\/government\/uploads\/system\/uploads\/attachment_data\/file\/709367\/Newborn_blood_spot_screening_data_collection_and_performance_analysis_report_2016_to_2017.pdf."},{"key":"ref_2","first-page":"1","article-title":"PKU dietary handbook to accompany PKU guidelines","volume":"15","author":"MacDonald","year":"2020","journal-title":"Orphanet J. Rare Dis."},{"key":"ref_3","unstructured":"(2021, August 10). Department of Education (2015) Supporting Pupils at School with Medical Conditions: Statutory Guidance for Governing Bod-Ies of Maintained Schools and Proprietors of Academies in England, Available online: https:\/\/assets.publishing.service.gov.uk\/government\/uploads\/system\/uploads\/attachment_data\/file\/803956\/supporting-pupils-at-school-with-medical-conditions.pdf."},{"key":"ref_4","unstructured":"(2021, August 10). Children and Families Act 2014 (c 6) Part 5 Pupils with Medical Conditions. Section 100, Available online: http:\/\/www.legislation.gov.uk\/ukpga\/2014\/6\/section\/100\/enacted."},{"key":"ref_5","unstructured":"(2021, August 10). Equality Act 2010, Available online: https:\/\/assets.publishing.service.gov.uk\/government\/uploads\/system\/uploads\/attachment_data\/file\/570382\/Equality_Act_2010-disability_definition.pdf."},{"key":"ref_6","unstructured":"(2021, August 10). Free school Meal Entitlement and Child Poverty in England, Available online: https:\/\/assets.publishing.service.gov.uk\/government\/uploads\/system\/uploads\/attachment_data\/file\/266587\/free-school-meals-and-poverty.pdf."},{"key":"ref_7","unstructured":"(2021, August 10). School Standards and Framework Act 1998, Available online: https:\/\/www.legislation.gov.uk\/ukpga\/1998\/31\/contents."},{"key":"ref_8","unstructured":"Gov.UK (2021, August 14). Academic Year 2020\/21. Schools, Pupils and Their Characteristics, Available online: https:\/\/explore-education-statistics.service.gov.uk\/find-statistics\/school-pupils-and-their-characteristics."},{"key":"ref_9","doi-asserted-by":"crossref","unstructured":"Georgina Wood, A.P., Evans, S., Adams, S., Costelloe, S., Eardley, J., Ellerton, C., Emm, A., Firman, S., Ford, S., and French, M. (2021). Special low protein foods pre-scribed in England for PKU patients: An analysis of prescribing patterns and cost, Unpublished paper.","DOI":"10.3390\/nu13113977"},{"key":"ref_10","unstructured":"LACA\u2014The School Food People (2021, August 20). School Meal Uptake Research November 2019. Independent Research Conducted by Dewberry Redpoint Ltd June 2019\u2013September 2019. Available online: https:\/\/laca.co.uk\/sites\/default\/files\/attachment\/news\/SMU%20Research%20Report%202019.pdf."},{"key":"ref_11","doi-asserted-by":"crossref","first-page":"998","DOI":"10.1136\/adc.2003.047258","article-title":"Survey of administration of medicines to pupils in primary schools within the London area","volume":"89","author":"Wong","year":"2004","journal-title":"Arch. Dis. Child."},{"key":"ref_12","unstructured":"National Society of Phenylketonuria (2021, August 24). Health Care Plan for a Child with PKU at School. 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Rehabilitation"},{"key":"ref_16","first-page":"57","article-title":"Living with Phenylketonuria: Lessons from the PKU community","volume":"17","author":"Ford","year":"2018","journal-title":"Mol. Genet. Metab. Rep."},{"key":"ref_17","first-page":"41","article-title":"Blood phenylalanine control in adolescents with phenylketonuria","volume":"16","author":"Walter","year":"2004","journal-title":"Int. J. Adolesc. Med. Heal."},{"key":"ref_18","doi-asserted-by":"crossref","first-page":"55","DOI":"10.1016\/S0140-6736(02)09334-0","article-title":"How practical are recommendations for dietary control in phenylketonuria?","volume":"360","author":"Walter","year":"2002","journal-title":"Lancet"}],"container-title":["Nutrients"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.mdpi.com\/2072-6643\/13\/11\/3863\/pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,11]],"date-time":"2025-10-11T07:22:16Z","timestamp":1760167336000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.mdpi.com\/2072-6643\/13\/11\/3863"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,10,28]]},"references-count":18,"journal-issue":{"issue":"11","published-online":{"date-parts":[[2021,11]]}},"alternative-id":["nu13113863"],"URL":"https:\/\/doi.org\/10.3390\/nu13113863","relation":{},"ISSN":["2072-6643"],"issn-type":[{"value":"2072-6643","type":"electronic"}],"subject":[],"published":{"date-parts":[[2021,10,28]]}}}