Dietary treatment in Dutch children with phenylketonuria: An inventory of associated social restrictions and eating problems

• Published in: Nutrition (Burbank, Los Angeles County, Calif.) Los Angeles County, Calif.), 2022-05, Vol.97, p.111576-111576, Article 111576
• Main Authors: Haitjema, Sietske, Lubout, Charlotte M.A., Abeln, David, Bruijn-van der Veen, Marlies de, MacDonald, Anita, Wolffenbuttel, Bruce H.R., van Spronsen, Francjan J.
• Format: Article
• Language: English
• Subjects: Adolescent; Anxiety; Behavior; Caregivers; Child; Child, Preschool; Children; Children & youth; Constrictions; Diet; Dietary restrictions; Dietary treatment; Dutch children; Eating; Eating problems; Families & family life; Feeding behavior; Food; Humans; Infant; Pediatrics; Phenylketonuria; Phenylketonurias - therapy; Pilot Projects; Proteins; Questionnaires; Restrictions; Social restrictions; Surveys and Questionnaires; Weaning
• ISSN: 0899-9007; 1873-1244
• DOI: 10.1016/j.nut.2021.111576

•Our phenylketonuria (PKU)–specific questionnaire assessed problems related to the dietary restrictions of PKU.•Rigid dietary treatment has a (negative) impact on the social life of families with children who have PKU.•Caregivers of children with PKU (non-tetrahydrobiopterin responsive) experienced more stress during the evening meal.•Children with PKU (non-tetrahydrobiopterin responsive) had more difficulty trying out new foods.•Children with PKU (non-tetrahydrobiopterin responsive) ate their evening meal more often separate from the rest of the family. Dietary treatment in phenylketonuria (PKU) is known to cause eating problems, but knowledge of both prevalence and magnitude, especially for social restrictions, is scarce. Our aim was to evaluate the social restrictions and eating problems that children with PKU and their caregivers experience with dietary treatment. A web-based questionnaire, based on the Behavioral Pediatrics Feeding Assessment Scale with additional PKU-specific questions, was developed in close collaboration with and distributed by the Dutch PKU Association, which sent an e-mail to its members containing a link to the questionnaire. The questionnaire was completed by caregivers of children with PKU in the Netherlands and caregivers of age-matched children without PKU. Data were analyzed with the Kruskal-Wallis and Mann-Whitney U test using SPSS. Compared with caregivers of children in the control group (ages 1–16 y; n = 50), caregivers of children with PKU (ages 1–16 y; n = 57) reported more difficulty in offering food variety, experienced more stress when eating an evening meal outside the home and during vacation, and were stricter about (accidental) spilling of food during dinner by the child (P < 0.05). They also reported to being angrier, more frustrated, and more anxious when feeding their child, and they more often felt that their child's eating pattern had a negative influence on the child's general health (P < 0.05). This pilot study provides further evidence that restriction of social activities and eating problems associated with dietary restrictions is more common in children with PKU, and warrants awareness on this topic among professionals working with these children.