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J Hum Nutr Diet. 2014 Apr;27 Suppl 2:4-11. doi: 10.1111/jhn.12065. Epub 2013 Apr 23.

Nutrition education tools used in phenylketonuria: clinician, parent and patient perspectives from three international surveys.

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IMD Nutrition, Children's Hospital Colorado, Aurora, CO, USA.



Three international surveys were developed aiming to identify the current nutrition educational tools used in the management of phenylketonuria (PKU) and the perceived effectiveness of these tools by clinicians, parents and patients.


The first two surveys were distributed through the Metabolic Dietitians ListServe (, and the third survey was distributed by international clinics and the National PKU Alliance website ( A total of 888 responses (S1, n = 88; S2, n = 81; S3, n = 719) were collected from all three surveys. The surveys represent participants from 17 countries, in Europe; North America (USA and Canada); Mexico; Argentina; Turkey; Australia; and Africa (Tunisia).


A consistent decline in 'parents as role models' as an educational tool was observed starting at age 10 years. Patients responded they feel their families are the most effective form of education, whereas handouts were selected as the least effective educational tool by patients. Parents responded they feel the most effective educational tool is one-on-one counselling. Patients and parents show a desirable trend in wanting to attend group clinic, even in centres where this type of educational tool is not offered.


There was a discrepancy between clinicians and patient views regarding the perceived effectiveness of the nutrition education tools. Future research is needed surrounding the impact nutrition education may have on improved dietary compliance in patients with PKU.


PKU; dietary compliance; education resource; nutrition education; phenylketonuria

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