title: Nutrition education tools used in phenylketonuria: clinician, parent and patient perspectives from three international surveys.
abstract: BACKGROUND
  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.
  
  
  METHODS
  The first two surveys were distributed through the Metabolic Dietitians ListServe (pno-metabl@listserv.cc.emory.edu), and the third survey was distributed by international clinics and the National PKU Alliance website (www.npkua.org). 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).
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: IMD Nutrition, Children's Hospital Colorado, Aurora, CO, USA.
authors.forename: L E
authors.initials: LE
authors.lastname: Bernstein
authors.forename: J R
authors.initials: JR
authors.lastname: Helm
authors.forename: J C
authors.initials: JC
authors.lastname: Rocha
authors.forename: M F
authors.initials: MF
authors.lastname: Almeida
authors.forename: F
authors.initials: F
authors.lastname: Feillet
authors.forename: R M
authors.initials: RM
authors.lastname: Link
authors.forename: M
authors.initials: M
authors.lastname: Gizewska
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D003376:Counseling / Q000193:education; D004032:Diet; D019468:Disease Management; D005260:Female; D006266:Health Education / Q000379:methods*; D007722:Health Knowledge, Attitudes, Practice; D006306:Health Surveys; D006801:Humans; D016014:Linear Models; D008297:Male; D008875:Middle Aged; D044623:Nutrition Therapy / Q000379:methods*; D010290:Parents / Q000193:education; D010349:Patient Compliance; D010661:Phenylketonurias / Q000178:diet therapy*; D010820:Physicians; D010865:Pilot Projects; D055815:Young Adult
keywords: PKU; dietary compliance; education resource; nutrition education; phenylketonuria