The Challenges and Dilemmas of Interpreting Protein Labelling of Prepackaged Foods Encountered by the PKU Community

Abstract

Phenylketonuria (PKU) can lead to severe intellectual impairment unless a phenylalanine-restricted diet starts early in life. It requires expert user knowledge about the protein content of foods. The ability of adults or caregivers of children with PKU to calculate protein exchanges from food labels on manufactured foods and any difficulties they encounter in interpreting food labels has not been studied systematically. Individuals with PKU or their caregivers residing in the UK were invited to complete a cross-sectional online survey that collected both qualitative and quantitative data about their experience when calculating protein exchanges from the food labelling on prepackaged foods. Data was available from 246 questionnaire respondents (152 caregivers of patients with PKU aged <18 years, 57 patients with PKU aged ≥18 years or their caregivers (n = 28), and 9 teenagers with PKU). Thirty-one per cent (n = 76/246) found it difficult to interpret food protein exchanges from food labels. The respondents listed that the main issues with protein labelling were the non-specification of whether the protein content was for the cooked or uncooked weight (64%, n = 158/246); labels stating foods contained 0 g protein but then included protein sources in the list of ingredients (56%, n = 137/246); the protein content being given after a product was prepared with regular milk rather than the dry weight of the product (55%, n = 135/246); and the non-clarity of whether the protein content was for the weight of prepared or unprepared food (in addition to non-specification of cooked or uncooked weights on food labelling) (54%, n = 133/246). Over 90% (n = 222/246) of respondents had experienced problems with food labelling in the previous six months. Misleading or confusing protein labelling of manufactured foods was common. The food industry and legislators have a duty to provide accurate and clear protein food labelling to protect populations requiring low protein diets.

Phenylalanine Tolerance over Time in Phenylketonuria: A Systematic Review and Meta-Analysis

“…It is suggested that some children probably eat more protein than prescribed, even though they achieve acceptable blood Phe control [ 64 ]. Some teenagers who self-manage their dietary treatment may have little knowledge about the protein content of foods, and it has also been shown that both adults with PKU and caregivers have difficulties in interpreting food protein content from food labels and consequently only approximate the amounts of protein contained in food [ 66 ]. Some patients may also feel they cannot disclose their actual Phe/protein intake in case of disapproval from health professionals.…”

Natural Protein Intake in Children with Phenylketonuria: Prescription vs. Actual Intakes

“…Previous studies have also shown a high rate (>50%) of protein-labelling errors (e.g., unclear, misleading, inaccurate, or incomplete information) affecting interpretation of protein content of packaged manufactured foods on supermarket websites [34]. Ninety per cent of patients with PKU or their caregivers reported that they experienced problems with food labelling e.g., difficulties with interpreting food protein exchanges from food labels or labels containing misleading or confusing information [35].…”