Banchev Atanas, Batorova Angelika, Faganel Kotnik Barbara, Kiss Csongor, Puras Gediminas, Zapotocka Ester, Zupancic-Salek Silva
Department of Pediatric Hematology and Oncology, University Hospital 'Tzaritza Giovanna - ISUL', Sofia, Bulgaria.
National Hemophilia Center, Department of Hematology and Transfusion Medicine, Faculty of Medicine of Comenius University and University Hospital, Bratislava, Slovakia.
Patient Prefer Adherence. 2021 Apr 28;15:871-883. doi: 10.2147/PPA.S303822. eCollection 2021.
Information about the impact of hemophilia on daily living and information preferences for patients and their caregivers in Central Europe has been limited.
This cross-national survey was conducted between April 1 and October 15, 2020 and utilized a self-administered questionnaire to collect data (Typeform™) from people living with hemophilia in Bulgaria, Croatia, Czech Republic, Hungary, Slovakia and Slovenia. The questionnaire included 22 questions regarding difficulties in daily life and preferences for receiving hemophilia-related information. Respondents were stratified into two main groups, people with hemophilia (PwH) or their caregivers (CPwH). Results were analyzed using descriptive statistics.
Of the 364 respondents, 232 were PwH (63.7%) and 132 were CPwH (36.3%). In total, 70.3% of hemophilia patients/caregivers responded that they are kept sufficiently informed about life with hemophilia, with 68.0%, 59.1% and 56.3% of respondents obtaining information from their physicians, patient associations and via digital media (internet and social media), respectively. However, 97.8% of respondents expressed an interest in additional information, particularly new hemophilia treatment options (62.1%), which in contrast to other topics was indicated most frequently by both patients and caregivers in all six countries. Most frequent difficulties in everyday life with hemophilia were identified as mobility problems (41.8%), unexpected bleeding (38.5%), pain (35.4%), and uncertainty with what they can or cannot do (25.0%). During the 2020 COVID-19 pandemic, 52.5% of respondents reported that they did not experience any major change in daily living with hemophilia.
Based on our Central European survey, hemophilia mostly affects peoples' lives by causing mobility difficulties, unexpected bleeding, pain and uncertainty in daily activities. Although the majority of respondents reported being educated about hemophilia, most PwH and CPwH respondents sought additional information, highlighting the need for continuous personalized patient education to cope with present challenges.
关于血友病对中欧患者及其护理人员日常生活的影响以及信息偏好的信息一直有限。
这项跨国调查于2020年4月1日至10月15日进行，采用自填式问卷（Typeform™）从保加利亚、克罗地亚、捷克共和国、匈牙利、斯洛伐克和斯洛文尼亚的血友病患者中收集数据。问卷包括22个关于日常生活困难以及获取血友病相关信息偏好的问题。受访者被分为两个主要群体，血友病患者（PwH）或其护理人员（CPwH）。使用描述性统计分析结果。
在364名受访者中，232名是血友病患者（63.7%），132名是护理人员（36.3%）。总体而言，70.3%的血友病患者/护理人员表示他们充分了解血友病患者的生活，分别有68.0%、59.1%和56.3%的受访者从医生、患者协会以及通过数字媒体（互联网和社交媒体）获取信息。然而，97.8%的受访者表示有兴趣获取更多信息，特别是新的血友病治疗方案（62.1%），与其他主题相比，所有六个国家的患者和护理人员提及该主题的频率最高。血友病患者日常生活中最常见的困难被确定为行动不便（41.8%）、意外出血（38.5%）、疼痛（35.4%）以及对自身能做或不能做之事的不确定性（25.0%）。在2020年新冠疫情期间，52.5%的受访者表示他们在血友病患者的日常生活中没有经历任何重大变化。
基于我们在中欧的调查，血友病主要通过导致行动困难、意外出血、疼痛以及日常活动中的不确定性来影响人们的生活。尽管大多数受访者表示接受过血友病相关教育，但大多数血友病患者和护理人员受访者仍寻求更多信息，这突出表明需要持续进行个性化的患者教育以应对当前的挑战。
