Prescribing issues experienced by people living with phenylketonuria in the UK.
Diet
Low protein special foods
Phenylalanine
Phenylketonuria
Protein substitutes
Journal
Molecular genetics and metabolism reports
ISSN: 2214-4269
Titre abrégé: Mol Genet Metab Rep
Pays: United States
ID NLM: 101624422
Informations de publication
Date de publication:
Dec 2019
Dec 2019
Historique:
received:
31
07
2019
revised:
25
09
2019
accepted:
27
09
2019
entrez:
12
11
2019
pubmed:
12
11
2019
medline:
12
11
2019
Statut:
epublish
Résumé
Foods for Special Medical purposes (Phe-free protein substitutes [PS] and low protein foods [LPFs]) are central to successful dietary management of patients with phenylketonuria (PKU). In the UK, PS and LPFs are prescribed by primary care general practitioners (GPs) and dispensed by high street pharmacists or via home delivery companies. As patients and carers commonly reported access issues with PS and LPFs through the National Society for PKU (NSPKU) helpline, the NSPKU collected more information about the extent of prescriptions issues via a questionnaire. A cross sectional online survey was carried out consisting of 7 multiple choice and 3 open questions. The questionnaire was available via the NSPKU website over a 9-month period (15th May 2018-31st January 2019). Carers or patients with PKU were invited to participate if they had any problems accessing PS and LPF. There were 252 responses. 65% for children and 35% for adults, aged ≥18y with PKU. 59% ( Access to PKU dietary treatment is frequently disrupted for reasons relating to GP prescriptions and unreliable dispensing and delivery practices. These issues require immediate attention by UK health professionals in order to create a fairer and more efficient system for everyone.
Sections du résumé
BACKGROUND
BACKGROUND
Foods for Special Medical purposes (Phe-free protein substitutes [PS] and low protein foods [LPFs]) are central to successful dietary management of patients with phenylketonuria (PKU). In the UK, PS and LPFs are prescribed by primary care general practitioners (GPs) and dispensed by high street pharmacists or via home delivery companies. As patients and carers commonly reported access issues with PS and LPFs through the National Society for PKU (NSPKU) helpline, the NSPKU collected more information about the extent of prescriptions issues via a questionnaire.
METHODS
METHODS
A cross sectional online survey was carried out consisting of 7 multiple choice and 3 open questions. The questionnaire was available via the NSPKU website over a 9-month period (15th May 2018-31st January 2019). Carers or patients with PKU were invited to participate if they had any problems accessing PS and LPF.
RESULTS
RESULTS
There were 252 responses. 65% for children and 35% for adults, aged ≥18y with PKU. 59% (
DISCUSSION
CONCLUSIONS
Access to PKU dietary treatment is frequently disrupted for reasons relating to GP prescriptions and unreliable dispensing and delivery practices. These issues require immediate attention by UK health professionals in order to create a fairer and more efficient system for everyone.
Identifiants
pubmed: 31709145
doi: 10.1016/j.ymgmr.2019.100527
pii: S2214-4269(19)30126-0
pii: 100527
pmc: PMC6831894
doi:
Types de publication
Journal Article
Langues
eng
Pagination
100527Informations de copyright
Crown Copyright © 2019 Published by Elsevier Inc.
Déclaration de conflit d'intérêts
Suzanne Ford has received either funding to attend conferences or honoraria from Nutricia, Vitaflo International, Biomarin, and Mevalia. She is a member of a Nutricia Advisory Board on PKU. Mike O'Driscoll has no conflicts of interest. Anita MacDonald has received research funding and/or honoraria from Nutricia, Vitaflo International, Biomarin, Galen Pharmaceuticals and Mevalia. She is a member of the European Nutrition Expert Panel (Biomarin), member of Sapropterin Advisory Board (Biomarin), member of the Advisory Board entitled ELEMENT (Danone-Nutricia), and member of an Advisory Board for Arla and Applied Pharma Research.
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