Accidental Consumption of Aspartame in Phenylketonuria: Patient Experiences

Aspartame is a phenylalanine containing sweetener, added to foods and drinks, which avoided in phenylketonuria (PKU). However, the amount of provided by aspartame unidentifiable from food drinks labels. We performed cross-sectional online survey aiming examine accidental consumption PKU. 206 questionnaires (58% female) were completed. 55% respondents (n = 114) adults with PKU or their parent/carers 45% 92) parents/carers children 74% 152/206) had consumed food/drinks aspartame. Repeated was common more frequent (p < 0.0001). The accidentally fizzy (68%, n 103/152), fruit squash (40%, 61/152), chewing gum (30%, 46/152), flavoured water (25%, 38/152), ready drink cartons (23%, 35/152) sports (21%, 32/152). main reasons described for consumption, manufacturers’ changing recipes (81%, 123/152), inability check ingredients pubs/restaurants/vending machines (59%, 89/152) forgetting label (32%, 49/152). 23% (n= 48/206) been prescribed medicines 75% 36/48) said that not checked medics when prescribed. 85% 164/192) considered sugar tax made likely. Some difficulties patients identification restaurants, pubs, vending (77%, 158/206); similarities appearance non-aspartame products (62%, 127/206); time consuming shopping/checking labels (56%, 115/206); unclear labelling (55%, 114/206). These issues caused anxiety person (52%, 106/206), parent/caregivers (46%, 95/206), guilt (42%, 87/206) social isolation 87/206). It important understand impact legislation such as on people Policy makers industry should ensure quality life rare conditions compromised through action.