Implementing a transition program from paediatric to adult services in Phenylketonuria

Detalhes bibliográficos
Autor(a) principal: Peres, Maria
Data de Publicação: 2021
Outros Autores: Almeida, Manuela F., Pinto, Élia J., Carmona, Carla, Rocha, Sara, Guimas, Arlindo, Ribeiro, Rosa, Martins, Esmeralda, Bandeira, Anabela, Macdonald, Anita, Rocha, Júlio C.
Tipo de documento: Artigo
Idioma: eng
Título da fonte: Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
Texto Completo: http://hdl.handle.net/10362/114279
Resumo: Funding: This article was supported by National Funds through FCT-Fundação para a Ciência e a Tecnologia, I.P., within CINTESIS, R&D Unit (reference UIDB/4255/2020).
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spelling Implementing a transition program from paediatric to adult services in PhenylketonuriaResults after two years of follow-up with an adult teamAdherenceMetabolic controlPhenylketonuriaTransition to adult careFood ScienceNutrition and DieteticsFunding: This article was supported by National Funds through FCT-Fundação para a Ciência e a Tecnologia, I.P., within CINTESIS, R&D Unit (reference UIDB/4255/2020).We aimed to report the implementation of a phenylketonuria (PKU) transition program and study the effects of follow-up with an adult team on metabolic control, adherence, and loss of follow-up. Fifty-five PKU patients were analysed in the study periods (SP): 2 years before (SP1) and after the beginning of adult care (SP2). Retrospective data on metabolic control and number of clinic appointments were collected for each SP, and protein intakes were analysed. In SP2, three patients (6%) were lost to follow-up. There was a small but statistically significant increase in median number of annual blood spots from SP1 to SP2: 11 (7–15) vs. 14 (7–20); p = 0.002. Mean ± SD of median blood Phe remained stable (525 ± 248 µmol/L vs. 552 ± 225 µmol/L; p = 0.100); median % of blood Phe < 480 µmol/L decreased (51 (4–96)% vs. 37 (5–85)%; p = 0.041) and median number of clinic appointments increased from SP1 to SP2: (5 (4–6) vs. 11 (8–13); p < 0.001). No significant differences were found regarding any parameter of protein intake. Our results suggest that the implementation of an adult service was successful as impact on metabolic control was limited and attendance remained high. Continuous dietetic care likely contributed to these results by keeping patients in fol-low-up and committed to treatment.NOVA Medical School|Faculdade de Ciências Médicas (NMS|FCM)RUNPeres, MariaAlmeida, Manuela F.Pinto, Élia J.Carmona, CarlaRocha, SaraGuimas, ArlindoRibeiro, RosaMartins, EsmeraldaBandeira, AnabelaMacdonald, AnitaRocha, Júlio C.2021-03-22T23:28:15Z2021-032021-03-01T00:00:00Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/article12application/pdfhttp://hdl.handle.net/10362/114279eng1422-8599PURE: 28644206https://doi.org/10.3390/nu13030799info: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:RCAAP2024-03-11T04:56:55Zoai:run.unl.pt:10362/114279Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-20T03:42:28.913896Repositório 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 Implementing a transition program from paediatric to adult services in Phenylketonuria
Results after two years of follow-up with an adult team
title Implementing a transition program from paediatric to adult services in Phenylketonuria
spellingShingle Implementing a transition program from paediatric to adult services in Phenylketonuria
Peres, Maria
Adherence
Metabolic control
Phenylketonuria
Transition to adult care
Food Science
Nutrition and Dietetics
title_short Implementing a transition program from paediatric to adult services in Phenylketonuria
title_full Implementing a transition program from paediatric to adult services in Phenylketonuria
title_fullStr Implementing a transition program from paediatric to adult services in Phenylketonuria
title_full_unstemmed Implementing a transition program from paediatric to adult services in Phenylketonuria
title_sort Implementing a transition program from paediatric to adult services in Phenylketonuria
author Peres, Maria
author_facet Peres, Maria
Almeida, Manuela F.
Pinto, Élia J.
Carmona, Carla
Rocha, Sara
Guimas, Arlindo
Ribeiro, Rosa
Martins, Esmeralda
Bandeira, Anabela
Macdonald, Anita
Rocha, Júlio C.
author_role author
author2 Almeida, Manuela F.
Pinto, Élia J.
Carmona, Carla
Rocha, Sara
Guimas, Arlindo
Ribeiro, Rosa
Martins, Esmeralda
Bandeira, Anabela
Macdonald, Anita
Rocha, Júlio C.
author2_role 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 Peres, Maria
Almeida, Manuela F.
Pinto, Élia J.
Carmona, Carla
Rocha, Sara
Guimas, Arlindo
Ribeiro, Rosa
Martins, Esmeralda
Bandeira, Anabela
Macdonald, Anita
Rocha, Júlio C.
dc.subject.por.fl_str_mv Adherence
Metabolic control
Phenylketonuria
Transition to adult care
Food Science
Nutrition and Dietetics
topic Adherence
Metabolic control
Phenylketonuria
Transition to adult care
Food Science
Nutrition and Dietetics
description Funding: This article was supported by National Funds through FCT-Fundação para a Ciência e a Tecnologia, I.P., within CINTESIS, R&D Unit (reference UIDB/4255/2020).
publishDate 2021
dc.date.none.fl_str_mv 2021-03-22T23:28:15Z
2021-03
2021-03-01T00:00:00Z
dc.type.status.fl_str_mv info:eu-repo/semantics/publishedVersion
dc.type.driver.fl_str_mv info:eu-repo/semantics/article
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dc.identifier.uri.fl_str_mv http://hdl.handle.net/10362/114279
url http://hdl.handle.net/10362/114279
dc.language.iso.fl_str_mv eng
language eng
dc.relation.none.fl_str_mv 1422-8599
PURE: 28644206
https://doi.org/10.3390/nu13030799
dc.rights.driver.fl_str_mv info:eu-repo/semantics/openAccess
eu_rights_str_mv openAccess
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application/pdf
dc.source.none.fl_str_mv reponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação
instacron:RCAAP
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collection Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
repository.name.fl_str_mv Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação
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