Knowledge, perceptions and behaviours of adults with PKU (version 1.0)
Research type
Research Study
Full title
Knowledge, perceptions and behaviours of dietary management in adults living with phenylketonuria: the questionnaire survey
IRAS ID
291736
Contact name
Sarah Firman
Contact email
Sponsor organisation
Guy's and St Thomas' NHS Foundation Trust
Duration of Study in the UK
1 years, 0 months, 0 days
Research summary
What is the knowledge, perceptions and behaviours of dietary management in adults living with phenylketonuria?
Phenylketonuria (PKU) is a rare condition caused by a defect in an enzyme which effects how the body breaks down and uses protein. A special diet is the only treatment option currently available in the UK and is recommended to be followed for life. However, many find the diet difficult and adherence has been shown to reduce with age.
No studies to date have looked at knowledge of the different parts of the diet and the perceptions of the diet, amongst adults with PKU. This study aims to address this by exploring the knowledge and perceptions of adults with PKU from across the UK, and whether there are any associations with these and dietary adherence. Findings will help to inform the direction of future research into optimising the care and management provided to adults with PKU.
An online questionnaire was developed by the research team and reviewed by two adults with PKU. The study will be conducted at Guy’s and St Thomas’ and patients under the care of the research team will be given the opportunity to complete the survey. The study will also be advertised by the National Society of PKU to their members via email, their social media and newsletter to give adults with PKU from across the UK the opportunity to participate in the study. To participate in the survey, participants need to have a diagnosis of PKU, be ≥16 years of age, and have been on a PKU diet for a period of their life. The online survey will be open for three months, and the study will last for 12 months.
REC name
South West - Central Bristol Research Ethics Committee
REC reference
21/SW/0062
Date of REC Opinion
7 May 2021
REC opinion
Favourable Opinion