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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| Format: | Article |
| Language: | English |
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MDPI AG
2022-01-01
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| Series: | Children |
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| Online Access: | https://www.mdpi.com/2227-9067/9/2/131 |
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| author | Dariusz Walkowiak Bożena Mikołuć Renata Mozrzymas Łukasz Kałużny Bożena Didycz Dorota Korycińska-Chaaban Michał Patalan Joanna Jagłowska Agnieszka Chrobot Rafał Staszewski Jarosław Walkowiak |
| author_facet | Dariusz Walkowiak Bożena Mikołuć Renata Mozrzymas Łukasz Kałużny Bożena Didycz Dorota Korycińska-Chaaban Michał Patalan Joanna Jagłowska Agnieszka Chrobot Rafał Staszewski Jarosław Walkowiak |
| author_sort | Dariusz Walkowiak |
| collection | DOAJ |
| 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 (<i>n</i> = 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 (<i>n</i> = 403), parents of PKU adults (<i>n</i> = 58) and PKU patients older than 16 years (<i>n</i> = 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. |
| first_indexed | 2024-03-09T22:19:00Z |
| format | Article |
| id | doaj.art-35fe2e78352a4775a41059a4beac025f |
| institution | Directory Open Access Journal |
| issn | 2227-9067 |
| language | English |
| last_indexed | 2024-03-09T22:19:00Z |
| publishDate | 2022-01-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Children |
| spelling | doaj.art-35fe2e78352a4775a41059a4beac025f2023-11-23T19:17:56ZengMDPI AGChildren2227-90672022-01-019213110.3390/children9020131Phenylketonuria Patients’ and Their Caregivers’ Perception of the Pandemic Lockdown: The Results of a National Online SurveyDariusz Walkowiak0Bożena Mikołuć1Renata Mozrzymas2Łukasz Kałużny3Bożena Didycz4Dorota Korycińska-Chaaban5Michał Patalan6Joanna Jagłowska7Agnieszka Chrobot8Rafał Staszewski9Jarosław Walkowiak10Department of Organization and Management in Health Care, Poznan University of Medical Sciences, 60-356 Poznan, PolandDepartment of Pediatrics, Rheumatology, Immunology and Metabolic Bone Diseases, Medical University of Bialystok, Waszyngtona Str. 17, 15-274 Bialystok, PolandResearch and Development Center, Regional Specialist Hospital, Kamieńskiego Str. 73a, 51-124 Wroclaw, PolandDepartment of Pediatric Gastroenterology and Metabolic Diseases, Poznan University of Medical Sciences, Szpitalna 27/33, 60-572 Poznan, PolandOutpatient Metabolic Clinic, University Children’s Hospital, 30-663 Cracow, PolandPKU Polyclinic, Institute of Mother and Child, Kasprzaka 17A, 01-211 Warsaw, PolandDepartment of Pediatrics, Endocrinology, Diabetology, Metabolic Diseases and Cardiology, Pomeranian Medical University, Unii Lubelskiej 1, 71-252 Szczecin, PolandDepartment of Pediatrics, Hematology and Oncology, Medical University of Gdansk, Dębinki Str. 7, 80-211 Gdansk, PolandVoivodship Children Hospital, Chodkiewicza Str. 44, 85-667 Bydgoszcz, PolandDepartment of Hypertension, Angiology and Internal Medicine, Poznan University of Medical Sciences, Długa Str. 1/2, 60-356 Poznan, PolandDepartment of Pediatric Gastroenterology and Metabolic Diseases, Poznan University of Medical Sciences, Szpitalna 27/33, 60-572 Poznan, PolandThe 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 (<i>n</i> = 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 (<i>n</i> = 403), parents of PKU adults (<i>n</i> = 58) and PKU patients older than 16 years (<i>n</i> = 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.https://www.mdpi.com/2227-9067/9/2/131phenylketonuriaPKUremote medicineCOVID-19 pandemic |
| spellingShingle | Dariusz Walkowiak Bożena Mikołuć Renata Mozrzymas Łukasz Kałużny Bożena Didycz Dorota Korycińska-Chaaban Michał Patalan Joanna Jagłowska Agnieszka Chrobot Rafał Staszewski Jarosław Walkowiak Phenylketonuria Patients’ and Their Caregivers’ Perception of the Pandemic Lockdown: The Results of a National Online Survey Children phenylketonuria PKU remote medicine COVID-19 pandemic |
| 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 | phenylketonuria PKU remote medicine COVID-19 pandemic |
| url | https://www.mdpi.com/2227-9067/9/2/131 |
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