A questionnaire survey on the usage of low protein staple foods by people with phenylketonuria in S cotland

Background There is scarce evidence available with respect to an evaluation of the role of low protein staple foods ( LPSF ) in the management of phenylketonuria ( PKU ). The present study explored beliefs, acceptability and issues around the use of LPSF by people with PKU or their carers. Methods A semi‐anonymous questionnaire was posted to 178 people with PKU in Scotland (104 children, aged 2–17 years, and 74 adults). Questions explored were: the type and amount of LPSF ordered; perceptions on use and usefulness of LPSF ; acceptability of the LPSF sensory properties (i.e. taste, smell, texture, appearance); support for the supply and use of LPSF ; and comments from primary healthcare professionals regarding dispensing and prescription. Results Eighty‐two individuals responded (46% response rate): 97% perceived that LPSF were useful for PKU management; more than 85% reported that LPSF were important for phenylalanine control, satisfying appetite, and diet variety. The most common LPSF ordered were pasta/rice/cous cous, flour, biscuits and bread. Fifty percent of respondents ordered <51% of the recommended unit allowance of LPSF . The sensory properties of LPSF were well perceived. Forty‐nine percent ( n  = 39) had received a comment from primary healthcare staff regarding the prescription or dispensing of LPSF ; 59% ( n  = 23) received negative comments, the majority of which came within general practitioner surgeries. Conclusions There is a positive attitude and perception on the use and usefulness of LPSF in the management of PKU . Issues with respect to the supply and provision of LPSF within primary health care may indicate poor communication between specialists and primary healthcare professionals or a lack of scientific evidence demonstrating their clinical effectiveness.