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

Dariusz Walkowiak,Jan Domaradzki

doi:10.1186/s13023-020-01432-6

Dariusz Walkowiak, Jan Domaradzki

Open Access

https://doi.org/10.1186/s13023-020-01432-6

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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 raisebox{1ex}{1}!left/ !raisebox{-1ex}{3}right. 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.

Highlights

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
This issue was for the first time presented in a large-scale survey of eight rare diseases conducted by EURORDIS in 17 European countries – Rare Diseases Europe [8] [Prader-Willi syndrome (PWS), Marfan syndrome (MFS), Crohn’s disease (CD), Duchenne muscular dystrophy (DMD), tuberous sclerosis (TS), cystic fibrosis (CF), Ehlers-Danlos syndrome (EDS) and fragile X syndrome (FRX)]
As the vast majority of respondents from both groups expressed their willingness to broaden their knowledge about rare diseases, it seems crucial to provide both students and nurses with university and postgraduate courses on rare diseases and to enable them to cooperate in interdisciplinary healthcare units that would support the process of decision-making and improve the quality of nursing care for RD patients and their families

Summary

Introduction

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. Individual rare diseases affect very few people, it is estimated that jointly they concern 6–8% of the world’s population [4]. This combined incidence of rare diseases means that a member of the medical personnel might never meet a patient with a specific RD, while patients with one of these diseases are encountered on a daily basis. It is unquestionable that patients with rare diseases face diagnostic delays. Half of the respondents affected by FRX reported a delay of at least 2.8 years between the first appearance of symptoms and obtaining a correct diagnosis. Subsequent studies carried out by organizations of patients with rare diseases confirmed these findings [9, 10]

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