Nurses' Knowledge of Rare Diseases: A Systematic Review.

IF 2 Q1 NURSING

Nursing Reports Pub Date : 2025-09-04 DOI:10.3390/nursrep15090321

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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引用次数: 0

Abstract

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.

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护士对罕见病知识的系统回顾。

背景：罕见病影响不到2000人中的1人，但总的来说，它们影响着数百万人。由于患病率低、临床异质性和缺乏标准化方案，其诊断和管理面临挑战。护士通过提供直接护理、情感支持和健康教育，在帮助和照顾这些病人方面发挥着关键作用。目的：本系统综述的目的是更新现有的护士对罕见病的认识水平，因为护士培训的下降会影响护理质量和早期发现的机会。方法：在Scopus、PubMed、CINAHL、SciELO和Cochrane图书馆进行文献检索，选择2014年至2024年间发表的罕见病知识研究。采用PRISMA模型，审查在PROSPERO注册，代码为CRD42024580656。结果：最终纳入了24项研究。主要结果显示，罕见病护理教育存在明显差距。结论：继续教育、远程医疗和卫生技术的整合是提高罕见病能力的重点。因此，加强各级罕见病护理培训是当务之急。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Nursing Reports NURSING-

CiteScore

2.50

自引率

4.20%

发文量

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.