Phenylketonuria Patients’ and Their Caregivers’ Perception of the Pandemic Lockdown: The Results of a National Online Survey

The first pandemic lockdown dramatically impacted many aspects of everyday life, including healthcare systems. The purpose of this study was to identify problems of patients with phenylketonuria (PKU) and their parents/caregivers during that time. We aimed to analyse potential differences in the sel...

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Autores principales: Walkowiak, Dariusz, Mikołuć, Bożena, Mozrzymas, Renata, Kałużny, Łukasz, Didycz, Bożena, Korycińska-Chaaban, Dorota, Patalan, Michał, Jagłowska, Joanna, Chrobot, Agnieszka, Staszewski, Rafał, Walkowiak, Jarosław
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8869859/
https://www.ncbi.nlm.nih.gov/pubmed/35204852
http://dx.doi.org/10.3390/children9020131
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author Walkowiak, Dariusz
Mikołuć, Bożena
Mozrzymas, Renata
Kałużny, Łukasz
Didycz, Bożena
Korycińska-Chaaban, Dorota
Patalan, Michał
Jagłowska, Joanna
Chrobot, Agnieszka
Staszewski, Rafał
Walkowiak, Jarosław
author_facet Walkowiak, Dariusz
Mikołuć, Bożena
Mozrzymas, Renata
Kałużny, Łukasz
Didycz, Bożena
Korycińska-Chaaban, Dorota
Patalan, Michał
Jagłowska, Joanna
Chrobot, Agnieszka
Staszewski, Rafał
Walkowiak, Jarosław
author_sort Walkowiak, Dariusz
collection PubMed
description The first pandemic lockdown dramatically impacted many aspects of everyday life, including healthcare systems. The purpose of this study was to identify problems of patients with phenylketonuria (PKU) and their parents/caregivers during that time. We aimed to analyse potential differences in the self-reported compliance and characteristics of contacts with a doctor/dietitian before and during the pandemic lockdown and the perception of access to special food and opinions on remote contacts between a particular group of respondents. All participants (n = 614) were asked to complete an online questionnaire that consisted of 31 questions on pandemic-related events and circumstances which may have directly or indirectly impacted health and treatment. The people who completed the survey were divided into three groups: parents of PKU children (n = 403), parents of PKU adults (n = 58) and PKU patients older than 16 years (n = 153). The differences among the three analysed groups were found in the number of contacts, the way of contacting a doctor/dietitian during the pandemic and satisfaction with remote contact. Caregivers of children with PKU reported better therapy compliance, more frequent contacts with specialists and more satisfaction with remote visits than adult patients. We also observed a relationship between satisfaction from remote contact and self-reported frequency of contacts with a doctor/dietitian, as well as a relationship between satisfaction from remote contact and recommended blood Phe levels reported by both patients and caregivers. Travel time exceeding three hours from the respondents’ location to their doctor was associated with higher odds of their recognition of remote contact as a method of PKU treatment only in the group of caregivers. In the caregiver groups, the reported worse access to low-Phe products during the lockdown was linked to the perceived difficulty of maintaining the diet. However, such a relationship was not found among patients. In conclusion, significant differences in the perception of the pandemic lockdown and its impact on health and treatment-related issues were found.
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spelling pubmed-88698592022-02-25 Phenylketonuria Patients’ and Their Caregivers’ Perception of the Pandemic Lockdown: The Results of a National Online Survey Walkowiak, Dariusz Mikołuć, Bożena Mozrzymas, Renata Kałużny, Łukasz Didycz, Bożena Korycińska-Chaaban, Dorota Patalan, Michał Jagłowska, Joanna Chrobot, Agnieszka Staszewski, Rafał Walkowiak, Jarosław Children (Basel) Article The first pandemic lockdown dramatically impacted many aspects of everyday life, including healthcare systems. The purpose of this study was to identify problems of patients with phenylketonuria (PKU) and their parents/caregivers during that time. We aimed to analyse potential differences in the self-reported compliance and characteristics of contacts with a doctor/dietitian before and during the pandemic lockdown and the perception of access to special food and opinions on remote contacts between a particular group of respondents. All participants (n = 614) were asked to complete an online questionnaire that consisted of 31 questions on pandemic-related events and circumstances which may have directly or indirectly impacted health and treatment. The people who completed the survey were divided into three groups: parents of PKU children (n = 403), parents of PKU adults (n = 58) and PKU patients older than 16 years (n = 153). The differences among the three analysed groups were found in the number of contacts, the way of contacting a doctor/dietitian during the pandemic and satisfaction with remote contact. Caregivers of children with PKU reported better therapy compliance, more frequent contacts with specialists and more satisfaction with remote visits than adult patients. We also observed a relationship between satisfaction from remote contact and self-reported frequency of contacts with a doctor/dietitian, as well as a relationship between satisfaction from remote contact and recommended blood Phe levels reported by both patients and caregivers. Travel time exceeding three hours from the respondents’ location to their doctor was associated with higher odds of their recognition of remote contact as a method of PKU treatment only in the group of caregivers. In the caregiver groups, the reported worse access to low-Phe products during the lockdown was linked to the perceived difficulty of maintaining the diet. However, such a relationship was not found among patients. In conclusion, significant differences in the perception of the pandemic lockdown and its impact on health and treatment-related issues were found. MDPI 2022-01-19 /pmc/articles/PMC8869859/ /pubmed/35204852 http://dx.doi.org/10.3390/children9020131 Text en © 2022 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
Walkowiak, Dariusz
Mikołuć, Bożena
Mozrzymas, Renata
Kałużny, Łukasz
Didycz, Bożena
Korycińska-Chaaban, Dorota
Patalan, Michał
Jagłowska, Joanna
Chrobot, Agnieszka
Staszewski, Rafał
Walkowiak, Jarosław
Phenylketonuria Patients’ and Their Caregivers’ Perception of the Pandemic Lockdown: The Results of a National Online Survey
title Phenylketonuria Patients’ and Their Caregivers’ Perception of the Pandemic Lockdown: The Results of a National Online Survey
title_full Phenylketonuria Patients’ and Their Caregivers’ Perception of the Pandemic Lockdown: The Results of a National Online Survey
title_fullStr Phenylketonuria Patients’ and Their Caregivers’ Perception of the Pandemic Lockdown: The Results of a National Online Survey
title_full_unstemmed Phenylketonuria Patients’ and Their Caregivers’ Perception of the Pandemic Lockdown: The Results of a National Online Survey
title_short Phenylketonuria Patients’ and Their Caregivers’ Perception of the Pandemic Lockdown: The Results of a National Online Survey
title_sort phenylketonuria patients’ and their caregivers’ perception of the pandemic lockdown: the results of a national online survey
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8869859/
https://www.ncbi.nlm.nih.gov/pubmed/35204852
http://dx.doi.org/10.3390/children9020131
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