Olivieri Martin, Halimeh Susan, Wermes Cornelia, Hassenpflug Wolf, Holstein Katharina, von Mackensen Sylvia
Abteilung für pädiatrische Hämostaseologie, Pädiatrisches Hämophiliezentrum, Kinderklinik und Kinderpoliklinik im Dr. von Haunerschen Kinderspital, LMU Klinikum, München, Deutschland.
Gerinnungszentrum Rhein-Ruhr, Duisburg, Deutschland.
Gesundheitswesen. 2021 Apr;83(4):282-290. doi: 10.1055/a-1399-9166. Epub 2021 Apr 8.
Chronic diseases, such as inherited bleeding disorders (IBD) are often associated with high costs of medical care. COVID-19 containment measures, including isolation and triage, led to restrictions in the health care of chronically ill patients. The aim of the present study was to investigate the effects of the COVID-19 pandemic on the health care of IBD patients.
In this multicentre cross-sectional study to evaluate the effects of COVID-19 on the mental health and quality of care of patients with inherited bleeding disorder, an ad hoc questionnaire was sent to 586 patients/parents of children with haemophilia A, B or von Willebrand syndrome type 3. In addition to demographic and clinical data, patients/parents of patients with inherited bleeding disorders were asked about their thoughts, concerns and experiences regarding their medical care during the COVID-19 pandemic. Differences between clinical subgroups were calculated.
Significant differences were found between subgroups (severity, type of therapy, product class, comorbidities) with regard to the transmission of COVID-19 through plasma products, the effects of COVID-19 positive test results, fear of getting COVID-19, delayed drug supply and physiotherapy treatment.
The medical care of patients with inherited bleeding disorders, who need a continuous supply of essential drugs, is a particular challenge in times of pandemics. Therefore, worries and fears of IBD patients should be taken seriously and innovative communication channels established to maintain therapy standards and quality of care.
诸如遗传性出血性疾病（IBD）等慢性病往往伴随着高昂的医疗费用。包括隔离和分诊在内的新冠疫情防控措施导致慢性病患者的医疗保健受到限制。本研究的目的是调查新冠疫情对IBD患者医疗保健的影响。
在这项多中心横断面研究中，为评估新冠疫情对遗传性出血性疾病患者心理健康和护理质量的影响，向586名患有甲型、乙型血友病或3型血管性血友病的患者/患儿家长发放了一份特设问卷。除人口统计学和临床数据外，还询问了遗传性出血性疾病患者的患者/家长在新冠疫情期间对其医疗护理的想法、担忧和经历。计算了临床亚组之间的差异。
在通过血浆制品传播新冠病毒、新冠病毒检测呈阳性的影响、感染新冠病毒的恐惧、药物供应延迟和物理治疗等方面，亚组（严重程度、治疗类型、产品类别、合并症）之间存在显著差异。
在疫情期间，对于需要持续供应基本药物的遗传性出血性疾病患者的医疗护理是一项特殊挑战。因此，应认真对待IBD患者的担忧和恐惧，并建立创新的沟通渠道以维持治疗标准和护理质量。
