Needs assessment study of rare diseases education for nurses and nursing students in Poland

Background The 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. Methods We 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. Results Although only approximately1/3rd of respondents declared having participated in university classes in rare diseases, a markedly higher number (similar to 85% of nurses and similar to 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. Conclusion Both 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.