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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  < 0.001). An IHCP was significantly associated with improved supervision of food and protein substitute administration ( p  < 0.01), and better communication between parents/caregivers and the school team ( p  < 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.

Provision and Supervision of Food and Protein Substitute in School for Children with PKU: Parent Experiences