Walkowiak Dariusz, Mikołuć Bożena, Mozrzymas Renata, Kałużny Łukasz, Didycz Bożena, Korycińska-Chaaban Dorota, Patalan Michał, Jagłowska Joanna, Chrobot Agnieszka, Staszewski Rafał, Walkowiak Jarosław
Department of Organization and Management in Health Care, Poznan University of Medical Sciences, 60-356 Poznan, Poland.
Department of Pediatrics, Rheumatology, Immunology and Metabolic Bone Diseases, Medical University of Bialystok, Waszyngtona Str. 17, 15-274 Bialystok, Poland.
Children (Basel). 2022 Jan 19;9(2):131. doi: 10.3390/children9020131.
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 ( = 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 ( = 403), parents of PKU adults ( = 58) and PKU patients older than 16 years ( = 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.
首次疫情封锁对日常生活的许多方面产生了巨大影响，包括医疗系统。本研究的目的是确定苯丙酮尿症（PKU）患者及其父母/照顾者在此期间所面临的问题。我们旨在分析疫情封锁前和期间自我报告的依从性、与医生/营养师联系的特征以及特定受访者群体对特殊食物获取的看法和对远程联系的意见之间的潜在差异。所有参与者（n = 614）被要求完成一份在线问卷，该问卷由31个关于可能直接或间接影响健康和治疗的疫情相关事件及情况的问题组成。完成调查的人员被分为三组：PKU儿童的父母（n = 403）、PKU成人的父母（n = 58）和16岁以上的PKU患者（n = 153）。在三组分析对象中，发现了联系次数、疫情期间与医生/营养师联系的方式以及对远程联系的满意度方面的差异。PKU儿童的照顾者报告的治疗依从性更好，与专家的联系更频繁，对远程就诊的满意度也高于成年患者。我们还观察到远程联系满意度与自我报告的与医生/营养师联系频率之间的关系，以及远程联系满意度与患者和照顾者报告的推荐血苯丙氨酸水平之间的关系。从受访者所在地到医生处的行程时间超过三小时，仅在照顾者组中与他们将远程联系视为PKU治疗方法的认可度较高有关。在照顾者组中，报告的封锁期间低苯丙氨酸产品获取情况较差与维持饮食的感知困难有关。然而，在患者中未发现这种关系。总之，发现了对疫情封锁及其对健康和治疗相关问题影响的认知存在显著差异。
