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

Poole, Grace, Pinto, Alex, Evans, Sharon ORCID logoORCID:, Ford, Suzanne ORCID logoORCID:, O'Driscoll, Mike ORCID logoORCID:, Buckley, Sharon, Ashmore, Catherine, Daly, Anne ORCID logoORCID: and MacDonald, Anita (2022) Hungry for change: the experiences of people with PKU, and their caregivers, when eating out. Nutrients, 14 (3) , e626. ISSN 2072-6643 [Article] (doi:10.3390/nu14030626)

[img] PDF - Published version (with publisher's formatting)
Available under License Creative Commons Attribution 4.0.

Download (298kB)


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.

Item Type: Article
Keywords (uncontrolled): phenylketonuria, eating out, low protein food, restaurants
Research Areas: A. > School of Health and Education > Adult, Child and Midwifery
Item ID: 34632
Notes on copyright: Copyright: © 2022 by the authors. Licensee MDPI, Basel, Switzerland.
This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (
Useful Links:
Depositing User: Jisc Publications Router
Date Deposited: 03 Feb 2022 10:19
Last Modified: 29 Nov 2022 17:36

Actions (login required)

View Item View Item


Activity Overview
6 month trend
6 month trend

Additional statistics are available via IRStats2.