Knowledge and Awareness of Rare Diseases Among Healthcare Professionals in the Kingdom of Bahrain

Abstract

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. MethodThe 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. ResultsOf 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. ConclusionThis 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.

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“…A disease is often considered to be rare when it affects less than 1 in 2000 individuals. [26] acquired aplastic anemia, Fryns syndrome, giant cell myocarditis disease An abnormal condition of a part, organ, or system of an organism resulting from various causes such as infection, inflammation, environmental factors, or genetic defect, and characterized by a patterned group of signs and/or symptoms. cancer, Alzheimer, cardiovascular disease symptom_and_sign Signs and symptoms are abnormalities that may suggest a disease.…”