Abstract
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.
Highlights
Eating out, defined as eating foods that are prepared by others and consumed out of the home in food establishments such as restaurants, cafes, canteens, and fast-food outlets, is a growing trend
Data were available from 254 participants
While it is expected that people dining outside the home should derive social and psychological enjoyment [12], with satisfaction of appetite, and respite from low-protein meal preparation, our results suggest that people with PKU or their caregivers were unable to enjoy stress-free and spontaneous meals
Summary
Eating out, defined as eating foods that are prepared by others and consumed out of the home in food establishments such as restaurants, cafes, canteens, and fast-food outlets, is a growing trend It is a well-established core social activity among people in the UK [1,2]. People with phenylketonuria (PKU), an inherited metabolic disorder, characterised by the inability to hydrolyse the amino acid phenylalanine, are treated with a low-phenylalanine and aspartame-free diet. Whilst this dietary treatment is critical to avoid neurological damage, it is complex, with the natural protein intake of patients with classical PKU being decreased to as low as 20% of regular intake when prescribed dietary treatment only. Eating outside the home may be uncomfortable for people with PKU as they must constantly navigate social situations in which they are unable to eat what others eat, with most of the regular meal items being excluded
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