Dietetic Management of Adults with Phenylketonuria (PKU) in the UK: A Care Consensus Document.

Louise Robertson, Sarah Adam, Charlotte Ellerton, Suzanne Ford, Melanie Hill, Gemma Randles, Alison Woodall, Carla Young, Anita MacDonald

Nutrients 2022 Jan 28

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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.

Citation

Louise Robertson, Sarah Adam, Charlotte Ellerton, Suzanne Ford, Melanie Hill, Gemma Randles, Alison Woodall, Carla Young, Anita MacDonald. Dietetic Management of Adults with Phenylketonuria (PKU) in the UK: A Care Consensus Document. Nutrients. 2022 Jan 28;14(3)