Sinan Israa, Mihdawi Maha, Farahat A Rahman, Fida Mariam
Research and Development, King Hamad University Hospital, Al Muharraq, BHR.
Research and Development, Canadore College, North Bay, CAN.
Cureus. 2023 Oct 25;15(10):e47676. doi: 10.7759/cureus.47676. eCollection 2023 Oct.
Aim Recent studies highlighted that lack of knowledge on rare diseases is a problem that requires attention. This study aims to assess healthcare professionals' general awareness and knowledge of rare diseases in a tertiary hospital in the Kingdom of Bahrain. Method The study employed a cross-sectional design, utilizing a survey questionnaire derived from the most recent literature. The survey encompassed socio-demographic factors and quiz-based questions that were previously created by Domaradzi and Walkowiak to assess knowledge and awareness of rare diseases. To ensure convenience and accessibility, the survey was made available in both Arabic and English languages. Results Of a total of 333 responses, 25.2% were physicians, 53.8% were nurses, and 21.0% were allied health personnel. The majority of participants (87.4%) were aware of and had heard the term "rare diseases" prior to this survey. Participants were able to recognize what age group is frequently affected by rare diseases (p=0.023) and what the common cause of rare diseases worldwide is (p<0.001). Overall scores showed that only four participants answered all questions correctly, testing their knowledge of rare diseases. There was a weak correlation between self-declared knowledge and the overall score achieved (r=0.190; p<0.001), which indicates that the population's self-declared knowledge did not portray their actual knowledge of rare diseases. Conclusion This study highlights the need for improved knowledge of rare diseases among healthcare professionals, which aligns with the global knowledge landscape. To bridge the knowledge gap, we recommend action plans to ensure that healthcare professionals have rich knowledge of rare diseases and further improve patient care. Additionally, enhancing advocacy efforts is crucial to ensure optimal local and global patient care services.
目的 近期研究强调，对罕见病缺乏了解是一个需要关注的问题。本研究旨在评估巴林王国一家三级医院中医疗保健专业人员对罕见病的总体认识和了解情况。方法 本研究采用横断面设计，使用从最新文献中得出的调查问卷。该调查涵盖社会人口统计学因素以及由多马拉德齐和瓦尔科维亚克先前创建的基于问答的问题，以评估对罕见病的认识和了解。为确保便利性和可及性，调查问卷提供阿拉伯语和英语两种语言版本。结果 在总共333份回复中，25.2%为医生，53.8%为护士，21.0%为专职医疗人员。大多数参与者（87.4%）在本次调查之前就已经知晓并听说过“罕见病”这个术语。参与者能够识别哪个年龄组经常受到罕见病影响（p = 0.023）以及全球罕见病的常见病因是什么（p < 0.001）。总体得分显示，只有四名参与者正确回答了所有问题，以此测试他们对罕见病的了解。自我宣称的知识与所取得的总体得分之间存在微弱的相关性（r = 0.190；p < 0.001），这表明该人群自我宣称的知识并未反映出他们对罕见病的实际了解情况。结论 本研究强调医疗保健专业人员需要提高对罕见病的认识，这与全球知识状况相符。为弥合知识差距，我们建议制定行动计划，以确保医疗保健专业人员对罕见病有丰富的知识，并进一步改善患者护理。此外，加强宣传工作对于确保提供最佳的本地和全球患者护理服务至关重要。
