Abstract
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.
Highlights
Findings from this questionnaire suggest that pre-admission school planning, health professional training of school team members, and a carefully written individual health care plan (IHCP) that is reviewed at least annually are all essential components of successful PKU management within schools
There was disparity in the support given to children with PKU across the UK
Some catering services discriminated against children with PKU by refusing to provide suitable food; some parents distrusted the school meals service
Summary
In the UK, it is estimated there are approximately 800 children with phenylketonuria (PKU) aged 5 to 16 years [1]; they are expected to attain normal educational achievement and attend mainstream school. Children with classical PKU are treated with a phenylalanine restricted diet only; if they have mild PKU they may be treated with an adjunct therapy, sapropterin. Children with classical PKU usually tolerate < 80% of usual natural protein intake and treatment includes: avoidance of high protein foods, strict measurement and limited intake of moderate protein containing foods, inclusion of special low protein foods (SLPF’s) and supplementation with a low phenylalanine protein substitute [2]. Most children will be expected to eat at least one meal and take one dose of protein substitute at school. It is essential that there is safe provision and supervision of dietary treatment with appropriate adjustments that integrates the medical needs of a child with PKU into school life
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a callDisclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.
