Inmaculada Muñóz Sánchez, Jose Manuel Martínez-Linares, Raquel Rodríguez-Blanque, Jonathan Cortés-Martín, Andrés Reinoso-Cobo, Beatriz Lechuga Carrasco, Juan Carlos Sánchez-García
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Nurses' Knowledge of Rare Diseases: A Systematic Review.
Background: Rare diseases affect fewer than 1 in 2000 people, but collectively, they impact millions. Their diagnosis and management present challenges due to low prevalence, clinical heterogeneity, and a lack of standardized protocols. Nurses play a key role in assisting and caring for these patients by providing direct care, emotional support, and health education. Objective: The objective of this systematic review is to update the existing knowledge on nurses' level of understanding regarding rare diseases, as a decline in their training can compromise the quality of care and access to early detection. Methodology: A bibliographic search was conducted in Scopus, PubMed, CINAHL, SciELO, and Cochrane Library, selecting studies published between 2014 and 2024 on rare disease knowledge. The PRISMA model was followed, and the review was registered with PROSPERO under code CRD42024580656. Result: Ultimately, 24 studies were included. The main results showed a significant gap in nursing education concerning rare diseases. Conclusions: Continuous education, telemedicine, and the integration of health technologies were highlighted as improving competencies in rare diseases. Therefore, it is a priority to increase nursing training in rare diseases at all levels.
期刊介绍：
Nursing Reports is an open access, peer-reviewed, online-only journal that aims to influence the art and science of nursing by making rigorously conducted research accessible and understood to the full spectrum of practicing nurses, academics, educators and interested members of the public. The journal represents an exhilarating opportunity to make a unique and significant contribution to nursing and the wider community by addressing topics, theories and issues that concern the whole field of Nursing Science, including research, practice, policy and education. The primary intent of the journal is to present scientifically sound and influential empirical and theoretical studies, critical reviews and open debates to the global community of nurses. Short reports, opinions and insight into the plight of nurses the world-over will provide a voice for those of all cultures, governments and perspectives. The emphasis of Nursing Reports will be on ensuring that the highest quality of evidence and contribution is made available to the greatest number of nurses. Nursing Reports aims to make original, evidence-based, peer-reviewed research available to the global community of nurses and to interested members of the public. In addition, reviews of the literature, open debates on professional issues and short reports from around the world are invited to contribute to our vibrant and dynamic journal. All published work will adhere to the most stringent ethical standards and journalistic principles of fairness, worth and credibility. Our journal publishes Editorials, Original Articles, Review articles, Critical Debates, Short Reports from Around the Globe and Letters to the Editor.
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