ArticleOrphanet journal of rare diseases2020
Needs assessment study of rare diseases education for nurses and nursing students in Poland.
Article in Orphanet journal of rare diseases, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 29 papers.
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29 citing papers in PubMed, 48 citations in OpenAlex.
- Main Recommendations for Developing Education and Awareness Strategies for Rare Diseases: Scoping Review.JMIR medical education · 2026Article
- Health care, social, educational, and employment needs of individuals affected by rare diseases and their families in Catalonia, Spain.Orphanet journal of rare diseases · 2026Article
- "We are ambassadors, we are advocates": rare disease patient advocacy groups as knowledge brokers across health and social systems-a qualitative study from Poland.Frontiers in public health · 2026Article
- Awareness of Duchenne muscular dystrophy among medical staff in China: a multicenter cross-sectional survey.Frontiers in pediatrics · 2026Article
- Nurses' Knowledge of Rare Diseases: A Systematic Review.Nursing reports (Pavia, Italy) · 2025Review
- Rare and Undiagnosed Disease: A Learning Program for Nurses and Midwives.Nursing reports (Pavia, Italy) · 2025Article
- Effects of continuing medical education on emergency trainees' rare disease knowledge and attitude: a single-center study.BMC medical education · 2025Article
- "In God We Trust": An Exploratory Study of the Associations Between Religiosity and the Caregiving Experiences of Parents of Children with Rare Diseases in Poland.Journal of religion and health · 2024Article
- Mapping the diagnostic odyssey of congenital disorders of glycosylation (CDG): insights from the community.Orphanet journal of rare diseases · 2024Article
- Psychosocial Outcomes of Pain and Pain Management in Adults with Osteogenesis Imperfecta: A Qualitative Study.Journal of clinical psychology in medical settings · 2024Article
- Rare disease 101: an online resource teaching on over 7000 rare diseases in one short course.Orphanet journal of rare diseases · 2024Article
- Invisible patients in rare diseases: parental experiences with the healthcare and social services for children with rare diseases. A mixed method study.Scientific reports · 2024Article
- Factors affecting the ability of patients with complex vascular anomalies to navigate the healthcare system.Orphanet journal of rare diseases · 2024Article
- Knowledge and Awareness of Rare Diseases Among Healthcare Professionals in the Kingdom of Bahrain.Cureus · 2023Article
- Activities of Clinical Expertise and Research in a Rare Disease Referral Centre: A Place for Telemedicine beyond the COVID-19 Pandemic?Healthcare (Basel, Switzerland) · 2023Article
- Caring for Children with Dravet Syndrome: Exploring the Daily Challenges of Family Caregivers.Children (Basel, Switzerland) · 2023Article
- Knowledge and awareness level of healthcare professional candidate students on inherited metabolic diseases: a cross-sectional study.BMC medical education · 2023Article
- Educational needs in diagnosing rare diseases: A multinational, multispecialty clinician survey.Genetics in medicine open · 2023Article
- Rare disease education in Europe and beyond: time to act.Orphanet journal of rare diseases · 2022Article
- Knowledge and perception of inborn errors of metabolism (IEMs) among healthcare students at a selected public university in Klang Valley, Malaysia.Intractable & rare diseases research · 2022Article
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Authors and funding
2 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe treatment of rare diseases in contemporary health systems appears to be steadily gaining in importance, especially as the number of their occurrence is increasing. However, the education of medical staff in their correct diagnosis and therapy seems inadequate. Our study aims to analyze the knowledge and opinions concerning rare diseases among Polish nurses and nursing students.
methodsWe analyzed a group of 142 nurses and 113 nursing students, using a questionnaire comprising 28 questions about the number, examples, etiology and estimated frequency of rare diseases. Self-assessment of one's own theoretical and practical competence in the topic, as well as the opinion of the respondents on the need for a more prominent place of rare diseases in the curricula of medical universities, were also tested. We also asked about our informants' sources of information on rare diseases. The study was conducted between January and June 2019.
resultsAlthough only approximately [Formula: see text]rd of respondents declared having participated in university classes in rare diseases, a markedly higher number (~ 85% of nurses and ~ 75% of students) sees the need for such courses. Neither group feels well-prepared to deal with patients with rare diseases, with 75% of nurses and as many as 85% of nursing students expressing their concern in this respect. Both groups name the Internet as their major source of information.
conclusionBoth nurses and nursing students show insufficient knowledge of rare diseases, though the level of competence of the former is in many respects higher in a statistically significant way. Most respondents perceive serious deficiencies in their preparation to care for such patients. A change in university curricula seems much called for.
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