Special low protein foods prescribed in england for pku patients
Autor(a) principal: | |
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Data de Publicação: | 2021 |
Outros Autores: | , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
Tipo de documento: | Artigo |
Idioma: | eng |
Título da fonte: | Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
Texto Completo: | http://hdl.handle.net/10362/127794 |
Resumo: | Funding Information: Conflicts of Interest: A.M. (Anita MacDonald) is a member of, the advisory board ELEMENT Danone-Nutricia, the advisory board for Arla and Applied Pharma Research, and received research funding and honoraria from Nutricia, Vitaflo International, Biomarin, MetaHealth, Metax and Merck Serono. S.E. receives research funding from Nutricia, and has received financial support and honoraria from Nutricia and Vitaflo to attend/speak at study days and conferences. A.P. received an educational grant from Cambrooke Therapeutics and grants from Vitaflo International, Nutricia, Merck Serono, Biomarin and Mevalia to attend scientific meetings. A.D. received research funding from Vitaflo International, financial support from Nutricia, Mevalia and Vitaflo International to attend study days and conferences. J.C.R. is a member of the European Nutritionist Expert Panel (Biomarin), the Advisory Board for Applied Pharma Research and Nutricia, and has received honoraria as a speaker from APR, Merck Serono, Biomarin, Nutricia, Vitaflo, Cambrooke, PIAM, and Lifediet. S.F. (Suzanne Ford) is a member of the advisory board for Nutricia, and MetaHealth and has received financial support and honoraria from Cambrooke and Vitaflo. R.S. has received sponsorship to attend conferences and study days, payment to present at conferences from Nutricia Metabolics, Vitaflo Internation and Mevalia. C.E. has received honoraria and educational grants to attend events from Vitaflo, Nutricia, Meta Healthcare and SOBI and is a member of the Advisory Commitee on Borderline Substances. S.F. (Sarah Firman) has received funding to attend conferences and study days from Nutricia, Vitaflo International and Dr. Schär UK Ltd., and consulting fees from Vitaflo International and Meta Healthcare Ltd. C.N. has received financial support and honoraria from Nutricia and Vitaflo to attend/speak at study days and conferences. L.R. is a member of the Nutricia adult advisory board and received honorarium from Nutricia and Vitaflo in the past. F.J.W. receives honoraria, educational and travel grants from Nutricia and Vitaflo. M.H. is a member of advisory board Nutricia Danone and Applied Pharma and has received financial support and honoraria from Nutricia, Vitaflo, Cambrooke, Mevalia, Promin for attendance at conferences/meetings and speakers fee. A.T. (Allyson Terry) has received payment from Vitaflo International for speaking at a patient event. K.vW. receives honoraria and educational grants from Nutricia, Vitaflo and Meta Healthcare. S.T. is expected to receive honoraria from Vitaflo International for providing feedback and reviewing guidelines for PKU Sphere. G.W., M.F., L.G., C.P., S.A., A.M. (Anita MacDonald), A.T. (Alison Tooke), A.W., E.G., L.W., I.H., H.S., J.G., A.E., S.C., R.P. have no conflicts of interest to declare. Publisher Copyright: © 2021 by the authors. Licensee MDPI, Basel, Switzerland. |
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Special low protein foods prescribed in england for pku patientsAn analysis of prescribing patterns and costCostsEnglandPhenylketonuriaPrescribing patternsSpecial low protein foodsFood ScienceNutrition and DieteticsFunding Information: Conflicts of Interest: A.M. (Anita MacDonald) is a member of, the advisory board ELEMENT Danone-Nutricia, the advisory board for Arla and Applied Pharma Research, and received research funding and honoraria from Nutricia, Vitaflo International, Biomarin, MetaHealth, Metax and Merck Serono. S.E. receives research funding from Nutricia, and has received financial support and honoraria from Nutricia and Vitaflo to attend/speak at study days and conferences. A.P. received an educational grant from Cambrooke Therapeutics and grants from Vitaflo International, Nutricia, Merck Serono, Biomarin and Mevalia to attend scientific meetings. A.D. received research funding from Vitaflo International, financial support from Nutricia, Mevalia and Vitaflo International to attend study days and conferences. J.C.R. is a member of the European Nutritionist Expert Panel (Biomarin), the Advisory Board for Applied Pharma Research and Nutricia, and has received honoraria as a speaker from APR, Merck Serono, Biomarin, Nutricia, Vitaflo, Cambrooke, PIAM, and Lifediet. S.F. (Suzanne Ford) is a member of the advisory board for Nutricia, and MetaHealth and has received financial support and honoraria from Cambrooke and Vitaflo. R.S. has received sponsorship to attend conferences and study days, payment to present at conferences from Nutricia Metabolics, Vitaflo Internation and Mevalia. C.E. has received honoraria and educational grants to attend events from Vitaflo, Nutricia, Meta Healthcare and SOBI and is a member of the Advisory Commitee on Borderline Substances. S.F. (Sarah Firman) has received funding to attend conferences and study days from Nutricia, Vitaflo International and Dr. Schär UK Ltd., and consulting fees from Vitaflo International and Meta Healthcare Ltd. C.N. has received financial support and honoraria from Nutricia and Vitaflo to attend/speak at study days and conferences. L.R. is a member of the Nutricia adult advisory board and received honorarium from Nutricia and Vitaflo in the past. F.J.W. receives honoraria, educational and travel grants from Nutricia and Vitaflo. M.H. is a member of advisory board Nutricia Danone and Applied Pharma and has received financial support and honoraria from Nutricia, Vitaflo, Cambrooke, Mevalia, Promin for attendance at conferences/meetings and speakers fee. A.T. (Allyson Terry) has received payment from Vitaflo International for speaking at a patient event. K.vW. receives honoraria and educational grants from Nutricia, Vitaflo and Meta Healthcare. S.T. is expected to receive honoraria from Vitaflo International for providing feedback and reviewing guidelines for PKU Sphere. G.W., M.F., L.G., C.P., S.A., A.M. (Anita MacDonald), A.T. (Alison Tooke), A.W., E.G., L.W., I.H., H.S., J.G., A.E., S.C., R.P. have no conflicts of interest to declare. Publisher Copyright: © 2021 by the authors. Licensee MDPI, Basel, Switzerland.Patients with phenylketonuria (PKU) are reliant on special low protein foods (SLPFs) as part of their dietary treatment. In England, several issues regarding the accessibility of SLPFs through the national prescribing system have been highlighted. Therefore, prescribing patterns and expenditure on all SLPFs available on prescription in England (n = 142) were examined. Their costs in comparison to regular protein-containing (n = 182) and ‘free-from’ products (n = 135) were also analysed. Similar foods were grouped into subgroups (n = 40). The number of units and costs of SLPFs prescribed in total and per subgroup from January to December 2020 were calculated using National Health Service (NHS) Business Service Authority (NHSBSA) ePACT2 (electronic Prescribing Analysis and Cost Tool) for England. Monthly patient SLPF units prescribed were calculated using patient numbers with PKU and non-PKU inherited metabolic disorders (IMD) consuming SLPFs. This was compared to the National Society for PKU (NSPKU) prescribing guidance. Ninety-eight percent of SLPF subgroups (n = 39/40) were more expensive than regular and ‘free-from’ food subgroups. However, costs to prescribe SLPFs are significantly less than theoretical calculations. From January to December 2020, 208,932 units of SLPFs were prescribed (excluding milk replacers), costing the NHS £2,151,973 (including milk replacers). This equates to £962 per patient annually, and prescribed amounts are well below the upper limits suggested by the NSPKU, indicating under prescribing of SLPFs. It is recommended that a simpler and improved system should be implemented. Ideally, specialist metabolic dietitians should have responsibility for prescribing SLPFs. This would ensure that patients with PKU have the necessary access to their essential dietary treatment, which, in turn, should help promote dietary adherence and improve metabolic control.NOVA Medical School|Faculdade de Ciências Médicas (NMS|FCM)RUNWood, GeorginaPinto, AlexEvans, SharonDaly, AnneAdams, SandraCostelloe, SusieGribben, JoannaEllerton, CharlotteEmm, AnitaFirman, SarahFord, SuzanneFrench, MoiraGaff, LisaGiuliano, EmilyHill, MelanieHunjan, InderdipNewby, CamilleMackenzie, AllisonPereira, RachelPrescott, CelineRobertson, LouiseSeabert, HeidiSkeath, RachelTapley, SimonTerry, AllysonTooke, Alisonvan Wyk, KarenWhite, Fiona J.White, LucyWoodall, AlisonRocha, Júlio CésarMacdonald, Anita2021-11-15T23:36:48Z2021-112021-11-01T00:00:00Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdfhttp://hdl.handle.net/10362/127794eng1422-8599PURE: 34811737https://doi.org/10.3390/nu13113977info:eu-repo/semantics/openAccessreponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãoinstacron:RCAAP2024-03-11T05:07:38Zoai:run.unl.pt:10362/127794Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-20T03:46:12.876890Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãofalse |
dc.title.none.fl_str_mv |
Special low protein foods prescribed in england for pku patients An analysis of prescribing patterns and cost |
title |
Special low protein foods prescribed in england for pku patients |
spellingShingle |
Special low protein foods prescribed in england for pku patients Wood, Georgina Costs England Phenylketonuria Prescribing patterns Special low protein foods Food Science Nutrition and Dietetics |
title_short |
Special low protein foods prescribed in england for pku patients |
title_full |
Special low protein foods prescribed in england for pku patients |
title_fullStr |
Special low protein foods prescribed in england for pku patients |
title_full_unstemmed |
Special low protein foods prescribed in england for pku patients |
title_sort |
Special low protein foods prescribed in england for pku patients |
author |
Wood, Georgina |
author_facet |
Wood, Georgina Pinto, Alex Evans, Sharon Daly, Anne Adams, Sandra Costelloe, Susie Gribben, Joanna Ellerton, Charlotte Emm, Anita Firman, Sarah Ford, Suzanne French, Moira Gaff, Lisa Giuliano, Emily Hill, Melanie Hunjan, Inderdip Newby, Camille Mackenzie, Allison Pereira, Rachel Prescott, Celine Robertson, Louise Seabert, Heidi Skeath, Rachel Tapley, Simon Terry, Allyson Tooke, Alison van Wyk, Karen White, Fiona J. White, Lucy Woodall, Alison Rocha, Júlio César Macdonald, Anita |
author_role |
author |
author2 |
Pinto, Alex Evans, Sharon Daly, Anne Adams, Sandra Costelloe, Susie Gribben, Joanna Ellerton, Charlotte Emm, Anita Firman, Sarah Ford, Suzanne French, Moira Gaff, Lisa Giuliano, Emily Hill, Melanie Hunjan, Inderdip Newby, Camille Mackenzie, Allison Pereira, Rachel Prescott, Celine Robertson, Louise Seabert, Heidi Skeath, Rachel Tapley, Simon Terry, Allyson Tooke, Alison van Wyk, Karen White, Fiona J. White, Lucy Woodall, Alison Rocha, Júlio César Macdonald, Anita |
author2_role |
author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author |
dc.contributor.none.fl_str_mv |
NOVA Medical School|Faculdade de Ciências Médicas (NMS|FCM) RUN |
dc.contributor.author.fl_str_mv |
Wood, Georgina Pinto, Alex Evans, Sharon Daly, Anne Adams, Sandra Costelloe, Susie Gribben, Joanna Ellerton, Charlotte Emm, Anita Firman, Sarah Ford, Suzanne French, Moira Gaff, Lisa Giuliano, Emily Hill, Melanie Hunjan, Inderdip Newby, Camille Mackenzie, Allison Pereira, Rachel Prescott, Celine Robertson, Louise Seabert, Heidi Skeath, Rachel Tapley, Simon Terry, Allyson Tooke, Alison van Wyk, Karen White, Fiona J. White, Lucy Woodall, Alison Rocha, Júlio César Macdonald, Anita |
dc.subject.por.fl_str_mv |
Costs England Phenylketonuria Prescribing patterns Special low protein foods Food Science Nutrition and Dietetics |
topic |
Costs England Phenylketonuria Prescribing patterns Special low protein foods Food Science Nutrition and Dietetics |
description |
Funding Information: Conflicts of Interest: A.M. (Anita MacDonald) is a member of, the advisory board ELEMENT Danone-Nutricia, the advisory board for Arla and Applied Pharma Research, and received research funding and honoraria from Nutricia, Vitaflo International, Biomarin, MetaHealth, Metax and Merck Serono. S.E. receives research funding from Nutricia, and has received financial support and honoraria from Nutricia and Vitaflo to attend/speak at study days and conferences. A.P. received an educational grant from Cambrooke Therapeutics and grants from Vitaflo International, Nutricia, Merck Serono, Biomarin and Mevalia to attend scientific meetings. A.D. received research funding from Vitaflo International, financial support from Nutricia, Mevalia and Vitaflo International to attend study days and conferences. J.C.R. is a member of the European Nutritionist Expert Panel (Biomarin), the Advisory Board for Applied Pharma Research and Nutricia, and has received honoraria as a speaker from APR, Merck Serono, Biomarin, Nutricia, Vitaflo, Cambrooke, PIAM, and Lifediet. S.F. (Suzanne Ford) is a member of the advisory board for Nutricia, and MetaHealth and has received financial support and honoraria from Cambrooke and Vitaflo. R.S. has received sponsorship to attend conferences and study days, payment to present at conferences from Nutricia Metabolics, Vitaflo Internation and Mevalia. C.E. has received honoraria and educational grants to attend events from Vitaflo, Nutricia, Meta Healthcare and SOBI and is a member of the Advisory Commitee on Borderline Substances. S.F. (Sarah Firman) has received funding to attend conferences and study days from Nutricia, Vitaflo International and Dr. Schär UK Ltd., and consulting fees from Vitaflo International and Meta Healthcare Ltd. C.N. has received financial support and honoraria from Nutricia and Vitaflo to attend/speak at study days and conferences. L.R. is a member of the Nutricia adult advisory board and received honorarium from Nutricia and Vitaflo in the past. F.J.W. receives honoraria, educational and travel grants from Nutricia and Vitaflo. M.H. is a member of advisory board Nutricia Danone and Applied Pharma and has received financial support and honoraria from Nutricia, Vitaflo, Cambrooke, Mevalia, Promin for attendance at conferences/meetings and speakers fee. A.T. (Allyson Terry) has received payment from Vitaflo International for speaking at a patient event. K.vW. receives honoraria and educational grants from Nutricia, Vitaflo and Meta Healthcare. S.T. is expected to receive honoraria from Vitaflo International for providing feedback and reviewing guidelines for PKU Sphere. G.W., M.F., L.G., C.P., S.A., A.M. (Anita MacDonald), A.T. (Alison Tooke), A.W., E.G., L.W., I.H., H.S., J.G., A.E., S.C., R.P. have no conflicts of interest to declare. Publisher Copyright: © 2021 by the authors. Licensee MDPI, Basel, Switzerland. |
publishDate |
2021 |
dc.date.none.fl_str_mv |
2021-11-15T23:36:48Z 2021-11 2021-11-01T00:00:00Z |
dc.type.status.fl_str_mv |
info:eu-repo/semantics/publishedVersion |
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info:eu-repo/semantics/article |
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article |
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publishedVersion |
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http://hdl.handle.net/10362/127794 |
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eng |
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eng |
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1422-8599 PURE: 34811737 https://doi.org/10.3390/nu13113977 |
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info:eu-repo/semantics/openAccess |
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openAccess |
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