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

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.

Occupational Stress and Academic Staff Job Performance in Two Nigerian Universities

“…Nonetheless, even though stress is unavoidable, its effect can either be beneficial or harmful to an individual. Scholars have revealed that the harmful nature of stress affects two-thirds of the number of people who visit doctors (Drabick et al, 2021;Walkowiak et al, 2021;Zvada & Bhebhe, 2019). It has also been disclosed that Numerous studies have been carried out on occupational stress and job performance.…”

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

“…The non-validated questionnaire consisted of 31 questions, 27 of which were single choice, 2 multiple choice and 2 open-ended questions [ 8 ]. All questions referred to circumstances and pandemic-related events that may have directly or indirectly impacted our subjects’ health and therapy-related issues, as well as their perception of the consequences of the pandemic.…”

“…In a recently published national online survey on how PKU patients in Poland perceive health and therapy-related issues [ 8 ], we documented that 9.5% of our respondents failed to perform blood phenylalanine (Phe) tests throughout the examined six-week pandemic period (16 March–30 April 2020), with 21.3% reporting an increase in their blood Phe level as opposed to 15.3% who reported a decrease. Moreover, 26.1% of subjects found contacting their doctor or dietitian more difficult, while 39.3% perceived their access to the products necessary in their diet as restricted, but 63.4% were happy with the distance contact with their PKU specialist.…”

“…Self-assessed high stress was linked to higher odds of subjectively perceived limited access to Phe-free formulas and low-Phe products, as well as higher Phe concentrations and complaints other than those connected with PKU. These patients were also characterised by inadequate dietary compliance and had more difficulty contacting a PKU-treating centre [ 8 ].…”

“…The present study aimed to analyse potential differences in the self-reported compliance and characteristics of contacts with their doctor/dietician before and during the pandemic lockdown and the perception of remote access to special food and opinions of parents of PKU children and adults, as well as PKU patients older than 16 years who responded to the above-mentioned survey [ 8 ] or its continuation. It was hypothesised that different respondents would experience the pandemic lockdown and the consequences of the restrictions in different ways.…”