Department of Medical Psychology, University Medical Centre Hamburg-Eppendorf, Hamburg, Germany.
Coagulation and Thrombosis Centre (GZRR), Duisburg, Germany.
Haemophilia. 2020 Nov;26(6):e272-e281. doi: 10.1111/hae.14130. Epub 2020 Sep 15.
The worldwide pandemic spread of SARS-CoV-2 can lead to either respiratory infection or containment-associated isolation with possible higher impact on chronic diseases such as inherited bleeding disorders (IBD). The aim of the study was to evaluate the impact of COVID-19 on patients and caregivers of IBD patients regarding their concerns and worries related to own health, access to treatment and availability of factor concentrates and their experiences related to medical care.
Multicentre, cross-sectional study evaluating the impact of COVID-19 on mental health of IBD patients. An ad hoc questionnaire was developed and sent to 586 patients/caregivers with haemophilia A, haemophilia B and VWD type III. The survey included information on demographic and clinical data, needs, concerns and experiences regarding medical care during COVID-19 pandemic.
In total, 355 of the IBD-Group (200 patients, 155 caregivers) completed the survey (61.7% response rate). Most patients suffered from haemophilia A (73.8%) and were severely affected (64.7%). Eleven patients were in quarantine due to suspected COVID-19; none had symptoms. One quarter worried (very) strongly about getting the coronavirus, 71.3% asked themselves what will happen to them when they will get COVID-19, 40.1% felt unchanged, and 18.9% worried about delivery difficulties of their IBD treatment product. In 52.8%, medical appointments were postponed. Significant differences between caregivers and patients were found in most aspects.
The IBD patients affected by a chronic disorder have particular thoughts and worries regarding COVID-19. Haemophilia specialists should be committed to address these concerns and guarantee treatment despite containment strategies.
SARS-CoV-2 的全球大流行可能导致呼吸道感染或与隔离相关的隔离，这可能对慢性疾病如遗传性出血性疾病（IBD）产生更高的影响。本研究的目的是评估 COVID-19 对 IBD 患者及其照顾者的影响，包括他们对自身健康、治疗获取以及因子浓缩物供应的关注和担忧，以及他们在医疗方面的经历。
本研究采用多中心、横断面研究，评估 COVID-19 对 IBD 患者心理健康的影响。我们专门开发了一个调查问卷，并分发给 586 名患有血友病 A、血友病 B 和 VWD 型 III 的患者/照顾者。该调查包括人口统计学和临床数据、在 COVID-19 大流行期间对医疗的需求、关注和经历等信息。
共有 355 名 IBD 组（200 名患者，155 名照顾者）完成了调查（应答率为 61.7%）。大多数患者患有血友病 A（73.8%），且病情严重（64.7%）。有 11 名患者因疑似 COVID-19 而被隔离；他们均无任何症状。四分之一的患者（非常）强烈担心感染冠状病毒，71.3%的患者在考虑如果感染 COVID-19 会发生什么，40.1%的患者感觉没有变化，18.9%的患者担心他们的 IBD 治疗产品的供应会出现困难。52.8%的患者推迟了预约。在大多数方面，照顾者和患者之间存在显著差异。
患有慢性疾病的 IBD 患者对 COVID-19 有特殊的想法和担忧。血友病专家应致力于解决这些担忧，并确保在隔离策略下能够进行治疗。
