Cargando…

Telehealth and COVID-19: Empowering Standards of Management for Patients Affected by Phenylketonuria and Hyperphenylalaninemia

Phenylketonuria (PKU) and Hyperphenylalaninemia (HPA) are inborn errors of metabolism (IEM) due to mutations in the PAH gene resulting in increased blood phenylalanine (Phe) concentrations. Depending on the Phe levels, a lifelong dietary intervention may be needed. During the COVID-19 pandemic, find...

Descripción completa

Detalles Bibliográficos
Autores principales: Rovelli, Valentina, Zuvadelli, Juri, Paci, Sabrina, Ercoli, Vittoria, Re Dionigi, Alice, Selmi, Raed, Salvatici, Elisabetta, Cefalo, Graziella, Banderali, Giuseppe
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8622759/
https://www.ncbi.nlm.nih.gov/pubmed/34828453
http://dx.doi.org/10.3390/healthcare9111407
_version_ 1784605769322201088
author Rovelli, Valentina
Zuvadelli, Juri
Paci, Sabrina
Ercoli, Vittoria
Re Dionigi, Alice
Selmi, Raed
Salvatici, Elisabetta
Cefalo, Graziella
Banderali, Giuseppe
author_facet Rovelli, Valentina
Zuvadelli, Juri
Paci, Sabrina
Ercoli, Vittoria
Re Dionigi, Alice
Selmi, Raed
Salvatici, Elisabetta
Cefalo, Graziella
Banderali, Giuseppe
author_sort Rovelli, Valentina
collection PubMed
description Phenylketonuria (PKU) and Hyperphenylalaninemia (HPA) are inborn errors of metabolism (IEM) due to mutations in the PAH gene resulting in increased blood phenylalanine (Phe) concentrations. Depending on the Phe levels, a lifelong dietary intervention may be needed. During the COVID-19 pandemic, finding new strategies to ensure follow-up and metabolic control for such patients became mandatory and telehealth was identified as the most eligible tool to provide care and assistance beyond barriers. The aim of this study was to evaluate how telehealth use may have impacted disease follow-ups. Seven hundred and fifty-five patients affected by PKU/HPA in follow-ups at the Clinical Department of Pediatrics (San Paolo Hospital, ASST Santi Paolo e Carlo, University of Milan, Italy) were included in this study. The data regarding the used telehealth model, type of performed consultations and patients’ perspectives were retrospectively collected and analyzed after a one-year experience of implemented follow-ups. The results demonstrated that telehealth seemed to be a useful tool to improve the adherence to treatment and that it could guarantee continuous assistance and care beyond the surrounding epidemiological status. Patients expressed great satisfaction with the offered services and requested that they were implemented in standards of care on a long-term basis. Our results suggested the implementation of telehealth in the management guidelines for PKU/HPA patients.
format Online
Article
Text
id pubmed-8622759
institution National Center for Biotechnology Information
language English
publishDate 2021
publisher MDPI
record_format MEDLINE/PubMed
spelling pubmed-86227592021-11-27 Telehealth and COVID-19: Empowering Standards of Management for Patients Affected by Phenylketonuria and Hyperphenylalaninemia Rovelli, Valentina Zuvadelli, Juri Paci, Sabrina Ercoli, Vittoria Re Dionigi, Alice Selmi, Raed Salvatici, Elisabetta Cefalo, Graziella Banderali, Giuseppe Healthcare (Basel) Article Phenylketonuria (PKU) and Hyperphenylalaninemia (HPA) are inborn errors of metabolism (IEM) due to mutations in the PAH gene resulting in increased blood phenylalanine (Phe) concentrations. Depending on the Phe levels, a lifelong dietary intervention may be needed. During the COVID-19 pandemic, finding new strategies to ensure follow-up and metabolic control for such patients became mandatory and telehealth was identified as the most eligible tool to provide care and assistance beyond barriers. The aim of this study was to evaluate how telehealth use may have impacted disease follow-ups. Seven hundred and fifty-five patients affected by PKU/HPA in follow-ups at the Clinical Department of Pediatrics (San Paolo Hospital, ASST Santi Paolo e Carlo, University of Milan, Italy) were included in this study. The data regarding the used telehealth model, type of performed consultations and patients’ perspectives were retrospectively collected and analyzed after a one-year experience of implemented follow-ups. The results demonstrated that telehealth seemed to be a useful tool to improve the adherence to treatment and that it could guarantee continuous assistance and care beyond the surrounding epidemiological status. Patients expressed great satisfaction with the offered services and requested that they were implemented in standards of care on a long-term basis. Our results suggested the implementation of telehealth in the management guidelines for PKU/HPA patients. MDPI 2021-10-20 /pmc/articles/PMC8622759/ /pubmed/34828453 http://dx.doi.org/10.3390/healthcare9111407 Text en © 2021 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Rovelli, Valentina
Zuvadelli, Juri
Paci, Sabrina
Ercoli, Vittoria
Re Dionigi, Alice
Selmi, Raed
Salvatici, Elisabetta
Cefalo, Graziella
Banderali, Giuseppe
Telehealth and COVID-19: Empowering Standards of Management for Patients Affected by Phenylketonuria and Hyperphenylalaninemia
title Telehealth and COVID-19: Empowering Standards of Management for Patients Affected by Phenylketonuria and Hyperphenylalaninemia
title_full Telehealth and COVID-19: Empowering Standards of Management for Patients Affected by Phenylketonuria and Hyperphenylalaninemia
title_fullStr Telehealth and COVID-19: Empowering Standards of Management for Patients Affected by Phenylketonuria and Hyperphenylalaninemia
title_full_unstemmed Telehealth and COVID-19: Empowering Standards of Management for Patients Affected by Phenylketonuria and Hyperphenylalaninemia
title_short Telehealth and COVID-19: Empowering Standards of Management for Patients Affected by Phenylketonuria and Hyperphenylalaninemia
title_sort telehealth and covid-19: empowering standards of management for patients affected by phenylketonuria and hyperphenylalaninemia
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8622759/
https://www.ncbi.nlm.nih.gov/pubmed/34828453
http://dx.doi.org/10.3390/healthcare9111407
work_keys_str_mv AT rovellivalentina telehealthandcovid19empoweringstandardsofmanagementforpatientsaffectedbyphenylketonuriaandhyperphenylalaninemia
AT zuvadellijuri telehealthandcovid19empoweringstandardsofmanagementforpatientsaffectedbyphenylketonuriaandhyperphenylalaninemia
AT pacisabrina telehealthandcovid19empoweringstandardsofmanagementforpatientsaffectedbyphenylketonuriaandhyperphenylalaninemia
AT ercolivittoria telehealthandcovid19empoweringstandardsofmanagementforpatientsaffectedbyphenylketonuriaandhyperphenylalaninemia
AT redionigialice telehealthandcovid19empoweringstandardsofmanagementforpatientsaffectedbyphenylketonuriaandhyperphenylalaninemia
AT selmiraed telehealthandcovid19empoweringstandardsofmanagementforpatientsaffectedbyphenylketonuriaandhyperphenylalaninemia
AT salvaticielisabetta telehealthandcovid19empoweringstandardsofmanagementforpatientsaffectedbyphenylketonuriaandhyperphenylalaninemia
AT cefalograziella telehealthandcovid19empoweringstandardsofmanagementforpatientsaffectedbyphenylketonuriaandhyperphenylalaninemia
AT banderaligiuseppe telehealthandcovid19empoweringstandardsofmanagementforpatientsaffectedbyphenylketonuriaandhyperphenylalaninemia