Patients with phenylketonuria (PKU) require a phenylalanine/protein-restricted diet, with limited food choice. Interpreting food labels, calculating protein intake, and determining food suitability are complex and confusing tasks. A mobile multi-media low-protein diet app was developed to guide food choice, label interpretation, and protein calculation. ‘PKU Bite’® includes >1100 specialist and regular low-protein foods, is colour-coded for suitability, and features a protein calculator. A 12-week randomised controlled trial assessed app efficacy, compared with written/pictorial material, in 60 parents/caregivers of children with PKU, aged 1−16 years, and 21 adolescents with PKU. Questionnaires examined self-efficacy and label-reading knowledge; food records evaluated natural-protein intake, compared with prescriptions. There was no difference between groups in label-reading knowledge or self-efficacy, but there was a trend for improved accuracy of dietary protein calculation, when using the app (baseline/12-weeks: app 35%/48%; control 39%/35%). Parents of children <10 years of age (median 5.5 years), were most likely to use the app to check the phenylalanine/protein content of a food or to verify suitability of foods. Whilst the app was popular (43%), so too was contacting the dietitian (43%), using written/pictorial information (24%), or using social media (18%). This is the first dietary app for PKU to be studied in a systematic way as well as validated by healthcare professionals. It is a useful adjunct to existing resources and will be a valuable tool for educating parents of younger children.
Keywords: app; low-protein diet; multimedia; phenylketonuria (PKU).