Development of national consensus statements on food labelling interpretation and protein allocation in a low phenylalanine diet for PKU.

Evans, Sharon and Ford, Suzanne and Adam, Sarah and Adams, Sandra and Ash, Jane and Ashmore, Catherine and Caine, Gillian and Carruthers, Rachel and Cawtherley, Sarah and Chahal, Satnam and Clark, Anne and Cochrane, Barbara and Daly, Anne and Dines, Karen and Dixon, Marjorie and Dunlop, Carolyn and Ellerton, Charlotte and French, Moira and Gaff, Lisa and Gingell, Cerys and Green, Diane and Gribben, Joanna and Grimsley, Anne and Hallam, Paula and Hendroff, Una and Hill, Melanie and Hoban, Rachel and Howe, Sarah and Hunjan, Inderdip and Kaalund, Kit and Kelleher, Eimear and Khan, Farzana and Kitchen, Steve and Lang, Karen and Lowry, Sharan and Males, Jo and Martin, Georgina and McStravick, Nicola and Micciche, Avril and Newby, Camille and Nicol, Claire and Pereira, Rachel and Robertson, Louise and Ross, Kathleen and Simpson, Emma and Singleton, Kath and Skeath, Rachel and Stafford, Jacqueline and Terry, Allyson and Thom, Ruth and Tooke, Alison and vanWyk, Karen and White, Fiona and White, Lucy and MacDonald, Anita (2019) Development of national consensus statements on food labelling interpretation and protein allocation in a low phenylalanine diet for PKU. Orphanet journal of rare diseases, 14 (1). p. 2. ISSN 1750-1172. This article is available to all UHB staff and students via ASK Discovery tool http://tinyurl.com/z795c8c by using their UHB Athens login IDs

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Abstract

BACKGROUND

In the treatment of phenylketonuria (PKU), there was disparity between UK dietitians regarding interpretation of how different foods should be allocated in a low phenylalanine diet (allowed without measurement, not allowed, or allowed as part of phenylalanine exchanges). This led to variable advice being given to patients.

METHODOLOGY

In 2015, British Inherited Metabolic Disease Group (BIMDG) dietitians (n = 70) were sent a multiple-choice questionnaire on the interpretation of protein from food-labels and the allocation of different foods. Based on majority responses, 16 statements were developed. Over 18-months, using Delphi methodology, these statements were systematically reviewed and refined with a facilitator recording discussion until a clear majority was attained for each statement. In Phase 2 and 3 a further 7 statements were added.

RESULTS

The statements incorporated controversial dietary topics including: a practical 'scale' for guiding calculation of protein from food-labels; a general definition for exchange-free foods; and guidance for specific foods. Responses were divided into paediatric and adult groups. Initially, there was majority consensus (≥86%) by paediatric dietitians (n = 29) for 14 of 16 statements; a further 2 structured discussions were required for 2 statements, with a final majority consensus of 72% (n = 26/36) and 64% (n = 16/25). In adult practice, 75% of dietitians agreed with all initial statements for adult patients and 40% advocated separate maternal-PKU guidelines. In Phase 2, 5 of 6 statements were agreed by ≥76% of respondents with one statement requiring a further round of discussion resulting in 2 agreed statements with a consensus of ≥71% by dietitians in both paediatric and adult practice. In Phase 3 one statement was added to elaborate further on an initial statement, and this received 94% acceptance by respondents. Statements were endorsed by the UK National Society for PKU.

CONCLUSIONS

The BIMDG dietitians group have developed consensus dietetic statements that aim to harmonise dietary advice given to patients with PKU across the UK, but monitoring of statement adherence by health professionals and patients is required.

Item Type: Article
Additional Information: This article is available to all UHB staff and students via ASK Discovery tool http://tinyurl.com/z795c8c by using their UHB Athens login IDs
Subjects: W Public health. Health statistics. Occupational health. Health education
Divisions: Planned IP Care
Related URLs:
Depositing User: Miss Emily Johnson
Date Deposited: 10 May 2019 15:16
Last Modified: 10 May 2019 15:16
URI: http://www.repository.heartofengland.nhs.uk/id/eprint/2100

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