Dietetic management of adults with Phenylketonuria (PKU) in the UK: a care consensus document.
Robertson, Louise Adam, Sarah Ellerton, Charlotte Ford, Suzanne Hill, Melanie Randles, Gemma Woodall, Alison Young, Carla MacDonald, Anita
Robertson, Louise
Adam, Sarah
Ellerton, Charlotte
Ford, Suzanne
Hill, Melanie
Randles, Gemma
Woodall, Alison
Young, Carla
MacDonald, Anita
Abstract
There is an increasing number of adults and elderly patients with phenylketonuria (PKU) who are either early, late treated, or untreated. The principal treatment is a phenylalanine-restricted diet. There is no established UK training for dietitians who work with adults within the specialty of Inherited Metabolic Disorders (IMDs), including PKU. To address this, a group of experienced dietitians specializing in IMDs created a standard operating procedure (SOP) on the dietetic management of adults with PKU to promote equity of care in IMD dietetic services and to support service provision across the UK. The group met virtually over a period of 12 months until they reached 100% consensus on the SOP content. Areas of limited evidence included optimal blood phenylalanine reporting times to patients, protein requirements in older adults, management of weight and obesity, and management of disordered eating and eating disorders. The SOP does not include guidance on maternal PKU management. The SOP can be used as a tool for training dietitians new to the specialty and to raise the standard of education and care for patients with PKU in the UK.
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Date
2022-01-28
Type
Article
Subject
Genetics
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Citation
Robertson L, Adam S, Ellerton C, Ford S, Hill M, Randles G, Woodall A, Young C, MacDonald A. Dietetic Management of Adults with Phenylketonuria (PKU) in the UK: A Care Consensus Document. Nutrients. 2022 Jan 28;14(3):576. doi: 10.3390/nu14030576
Journal / Source Title
Nutrients
DOI
10.3390/nu14030576
PMID
35276935
Publisher
MDPI Publishing
Publisher’s URL
http://www.mdpi.com/journal/nutrients