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

Dariusz Walkowiak; Bożena Mikołuć; Renata Mozrzymas; Łukasz Kałużny; Bożena Didycz; Dorota Korycińska-Chaaban; Michał Patalan; Joanna Jagłowska; Agnieszka Chrobot; Rafał Staszewski; Jarosław Walkowiak

doi:10.3390/children9020131

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

Children (Basel). 2022 Jan 19;9(2):131. doi: 10.3390/children9020131.

Affiliations

¹ Department of Organization and Management in Health Care, Poznan University of Medical Sciences, 60-356 Poznan, Poland.
² Department of Pediatrics, Rheumatology, Immunology and Metabolic Bone Diseases, Medical University of Bialystok, Waszyngtona Str. 17, 15-274 Bialystok, Poland.
³ Research and Development Center, Regional Specialist Hospital, Kamieńskiego Str. 73a, 51-124 Wroclaw, Poland.
⁴ Department of Pediatric Gastroenterology and Metabolic Diseases, Poznan University of Medical Sciences, Szpitalna 27/33, 60-572 Poznan, Poland.
⁵ Outpatient Metabolic Clinic, University Children's Hospital, 30-663 Cracow, Poland.
⁶ PKU Polyclinic, Institute of Mother and Child, Kasprzaka 17A, 01-211 Warsaw, Poland.
⁷ Department of Pediatrics, Endocrinology, Diabetology, Metabolic Diseases and Cardiology, Pomeranian Medical University, Unii Lubelskiej 1, 71-252 Szczecin, Poland.
⁸ Department of Pediatrics, Hematology and Oncology, Medical University of Gdansk, Dębinki Str. 7, 80-211 Gdansk, Poland.
⁹ Voivodship Children Hospital, Chodkiewicza Str. 44, 85-667 Bydgoszcz, Poland.
¹⁰ Department of Hypertension, Angiology and Internal Medicine, Poznan University of Medical Sciences, Długa Str. 1/2, 60-356 Poznan, Poland.

Abstract

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.

Keywords: COVID-19 pandemic; PKU; phenylketonuria; remote medicine.