Diet discontinuation policies and practices of PKU clinics in the United States

V.E. Schuett, R.F. Gurda and E.S. Brown

American Journal of Public Health, 1980, vol. 70, issue 5, 498-503

Abstract: Marked diversity in policies and practices for discontinuation of the PKU diet in the U.S. was found in a nationwide survey. Seventy-two of the 78 identified clinical centers treating PKU provided data. No clinicians are currently considering diet discontinuation at ages earlier than their present policy or practice. A definite trend toward later discontinuation of diet was identified. A few clinicians have always recommended indefinite diet continuation while many clinics have experience with children ages 9-12 who have discontinued the diet. Clinics with seven or more children off diet in this age range are significantly more likely than smaller clinics to be considering a later age for diet discontinuation. There were 151 children approximately age 10 or older, who remain on a low phenylalanine diet. These children are followed by 29 clinics, but over one-half of them are followed by five clinics which have had long-standing policies of indefinite diet continuation. Factors associated with success in long-term management are a firm clinic policy supporting continued diet treatment; frequent, supportive contact with the family; open discussion by staff with families and establishment of a trusting relationship; teaching children to accept responsibility for diet management from an early age.

Date: 1980
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Persistent link: https://EconPapers.repec.org/RePEc:aph:ajpbhl:10.2105/ajph.70.5.498_9

DOI: 10.2105/AJPH.70.5.498

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