Hungry for change: the experiences of people with PKU, and their caregivers, when eating out

For patients with phenylketonuria (PKU), stringent dietary management is demanding and eating out may pose many challenges. Often, there is little awareness about special dietary requirements within the hospitality sector. This study’s aim was to investigate the experiences and behaviours of people with PKU and their caregivers when dining out. We also sought to identify common problems in order to improve their experiences when eating outside the home. 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 experiences when eating out. Data were available from 254 questionnaire respondents (136 caregivers or patients with PKU 18 years and 118 patients with PKU ≥ 18 years (n = 100) or their caregivers (n = 18)). Fifty-eight per cent dined out once per month or less (n = 147/254) and the biggest barrier to more frequent dining was ‘limited choice of suitable low-protein foods’ (90%, n = 184/204), followed by ‘no information about the protein content of foods’ (67%, n = 137/204). Sixty-nine per cent (n = 176/254) rated their dining experience as less than satisfactory. Respondents ranked restaurant employees’ knowledge of the PKU diet as very poor with an overall median rating of 1.6 (on a scale of 1 for extremely poor to 10 for extremely good). Forty-four per cent (n = 110/252) of respondents said that restaurants had refused to prepare alternative suitable foods; 44% (n = 110/252) were not allowed to eat their own prepared food in a restaurant, and 46% (n = 115/252) reported that restaurants had refused to cook special low-protein foods. Forty per cent (n = 101/254) of respondents felt anxious before entering restaurants. People with PKU commonly experienced discrimination in restaurants, with hospitality staff failing to support their dietary needs, frequently using allergy laws and concerns about cross-contamination as a reason not to provide suitable food options. It is important that restaurant staff receive training regarding low-protein diets, offer more low-protein options, provide protein analysis information on all menu items, and be more flexible in their approach to cooking low-protein foods supplied by the person with PKU. This may help people with PKU enjoy safe meals when dining out and socialising with others.

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