Knowledge and Attitudes of Future Healthcare Professionals Toward Rare Diseases.

Jan Domaradzki,Dariusz Walkowiak

doi:10.3389/fgene.2021.639610

Abstract

Caring for patients suffering from a rare disease (RD) requires the special and combined efforts of different healthcare professionals, including nurses, physiotherapists and physicians. Nevertheless, Poland still lacks a national plan for RDs and the undergraduate and postgraduate education of future healthcare professionals on RDs is also inadequate. Thus, the aim of this study was to assess the awareness of RDs among nursing, physiotherapy and medical students in Poland. It shows that although 98% of respondents had heard of the term “rare disease,” most students had problems in defining the most common causes of RDs and their prevalence. Students also lacked basic knowledge about the healthcare system for RD patients in the country. While over 95% of future nurses, physiotherapists and physicians assessed their knowledge about RDs as insufficient or very poor, almost 92% of medical students, and 84% of physiotherapy and nursing students, did not feel prepared for caring for RD patients. Furthermore, although the vast majority of respondents declared eagerness to broaden their knowledge on RDs, only 45% of medical students, 76% of nursing students and 88% of physiotherapy students believed that RDs should be included into the medical curricula. Simultaneously, for most students the Internet was the prime source of information on RDs. It is concluded that as caring for RD patients requires a multidisciplinary approach, by identifying the gap in the education of future nurses, physiotherapists and physicians this study shows that there is an urgent need of better education about RDs among future healthcare professionals.

Highlights

The European Union (EU) defines rare diseases (RDs) as chronically debilitating or life-threatening conditions of a prevalence of less than 5 per 10,000 persons (Eurordis, 2009)
The sample consisted of 463 females (70.8%) and 191 males (29.2%), all of Polish origin. 43 students declared having a person suffering from a RD in their family (18.4%)
One physiotherapy student suffered from a RD herself, no such question was asked in the questionnaire

Summary

Introduction

The European Union (EU) defines rare diseases (RDs) as chronically debilitating or life-threatening conditions of a prevalence of less than 5 per 10,000 persons (Eurordis, 2009). Due to the minimal training of physicians on RDs, lack of information and awareness about RDs among healthcare professionals, poor communication among health providers and lack of standardized criteria for diagnosis, the search for a diagnosis and therapy often turns into an endless odyssey (Anderson et al, 2013; Black et al, 2015). This is important because misdiagnosis or late diagnosis results in delayed or many unnecessary treatments and hospitalizations, the worsening of an RD patient’s condition or his or her premature death. According to the EU recommendation, social and medical education on RDs should be one of the key areas of each national plan or strategy (Council of the European Union, 2009)

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Conclusion