The Impact of the COVID-19 Pandemic on the Perception of Health and Treatment-Related Issues among Patients with Phenylketonuria in Poland—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, Ewa Starostecka, Joanna Zarębska and Jarosław Walkowiak
Additional contact information
Dariusz Walkowiak: Department of Organization and Management in Health Care, Poznan University of Medical Sciences, Przybyszewskiego 39, 60-356 Poznan, Poland
Bożena Mikołuć: Department of Pediatrics, Rheumatology, Immunology and Metabolic Bone Diseases, Medical University of Bialystok, 15-274 Bialystok, Poland
Renata Mozrzymas: Research and Development Center, Regional Specialist Hospital, 51-124 Wrocław, Poland
Łukasz Kałużny: Department of Pediatric Gastroenterology and Metabolic Diseases, Poznan University of Medical Sciences, 61-701 Poznan, Poland
Bożena Didycz: Outpatient Metabolic Clinic, University Children’s Hospital, 30-663 Krakow, Poland
Dorota Korycińska-Chaaban: PKU Polyclinic, Institute of Mother and Child, 01-211 Warsaw, Poland
Michał Patalan: Department of Pediatrics, Endocrinology, Diabetology, Metabolic Diseases and Cardiology, Pomeranian Medical University, 70-204 Szczecin, Poland
Joanna Jagłowska: Department of Pediatrics, Hematology and Oncology, Medical University of Gdansk, 80-210 Gdansk, Poland
Agnieszka Chrobot: Voivodship Children Hospital, 85-667 Bydgoszcz, Poland
Ewa Starostecka: The Regional Center of Rare Diseases, Polish Mother’s Memorial Hospital Research Institute, 93-338 Lodz, Poland
Joanna Zarębska: Upper Silesian Child Health Centre, 40-752 Katowice, Poland
Jarosław Walkowiak: Department of Pediatric Gastroenterology and Metabolic Diseases, Poznan University of Medical Sciences, 61-701 Poznan, Poland

IJERPH, 2021, vol. 18, issue 12, 1-11

Abstract: There is agreement that the pandemic has affected the healthcare system and behaviour of patients. This study aims to identify problems encountered by patients with phenylketonuria (PKU) and their parents/caregivers during the six-week pandemic lockdown in Poland (15 March to 30 April 2020). To determine the factors that influenced health and treatment-related issues, as well as the respondents’ perception of the impact of the pandemic, study participants were asked to complete a non-validated online questionnaire comprising 31 questions (including 27 single-choice, two multiple-choice and two open-ended ones). A total of 571 patients or their parents completed the questionnaire, with 9.5% of respondents not performing any blood phenylalanine (Phe) test in the analysed period, 21.3% declaring a blood Phe increase, and 15.3% a decrease. Increased problems in contacting the doctor or dietitian were reported by 26.1% of subjects, whereas 39.3% of them felt restricted access to dietary products. Most (63.4%) participants were satisfied with remote contact with their PKU clinic. Better compliance was associated with higher odds of acceptance of remote contact and of reporting fewer problems with contacting the doctor, and with lower odds of missing Phe testing. Self-reported high stress was associated with higher odds of reporting the limited availability of low-Phe products and Phe-free formulas, as well as with increased Phe concentrations and non-PKU-related health problems. These patients also had poor dietary compliance and experienced more problems in contacting specialists. Health and treatment-related problems experienced during the pandemic lockdown were related to a higher intensity of stress in patient’s family and worse therapy compliance before the pandemic. Previous experience of remote visits resulted in a better perception of this method of contact. It seems that this form of communication should be popularized and improved to increase therapy effectiveness in case of different limitations in the future. Special attention should be paid to vulnerable patients who may be at extra risk when the provision of standard care is affected.

Keywords: phenylketonuria; PKU; COVID-19 pandemic; compliance; remote medicine (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2021
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