Education and information needs for physicians about rare diseases in Spain

Abstract

Background: Rare diseases are a priority objective for public health systems. Given its complexity, late and misdiagnoses occur very often which causes mental and physical burden for patients and family. This would be caused, in part, for unprepared clinicians in this field. The aim of this study was to report the training needs and the perceived shortcomings of Spanish physicians of the public health system in the diagnosis, treatment and monitoring of patients with rare diseases. Methods: We used a descriptive cross-sectional study through an "ad hoc" survey of 26 questions was completed by 132 primary care physicians and 37 specialists during April and May 2018. Results: Less than a third of the physicians had received training in rare disease during their undergraduate or postgraduate years, and for hospital professionals, they received more training in the postgraduate period. Conclusion: Primary care physicians and specialists showed low training level in rare diseases. An academical and continuous program on rare disease, as well as, multidisciplinary units and high quality practice guidelines are necessary to help to prevention and support clinical decisions and improve quality of care of patients and families.

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

“…The results of our study mostly confirm the findings of previous studies, pointing to the lack of knowledge about rare diseases among medical students, but also show the students' recognition of the problem as important for public health, while Correct answers are written in boldface at the same time revealing the willingness of the majority of students to broaden their knowledge. The lack of appropriate knowledge of issues related to rare diseases has unfortunately been confirmed by research among physicians who also lack an easy access to educational opportunities and to information resources regarding rare diseases [24]. Moreover, a significant disproportion in knowledge between general practitioners and specialists has been noted [24,25].…”

“…At the same time, while earlier studies focused on knowledge and awareness on rare diseases among medical students and general practitioners [18][19][20][21][22][23][24][25], there is an urgent need of such training of all healthcare professionals, including nurses who are at the front line of the entire process of caring for RD patient and their families. Although the role of nurses in patient care systems varies from country to country [26][27][28], the relationship between the number and the level of education of nurses and patient outcomes tends to be well documented [29][30][31][32].…”

Improvements needed to support people living and working with a rare disease in Northern Ireland: current rare disease support perceived as inadequate

“…Ramalle-Gomara et al . (2014) conducted a survey with 234 students and found that only around 25% of them knew the definition of rare disease and an orphan drug, again highlighting the need for training and awareness raising [ 49 , 50 ]. Further training is needed to appropriately equip people to support those living with a rare disease [ 5 ].…”

Raising rare disease awareness using red flags, role play simulation and patient educators: results of a novel educational workshop on Raynaud phenomenon and systemic sclerosis

“…Several studies carried out in European countries, the United States and Australia have consistently found that first-line healthcare professionals felt insufficiently informed about RDs and considered their academic training on the subject was inadequate [6][7][8][9][10][11]. Hence, the need for a change in the way we teach RDs was acknowledged by the European Rare Disease Action (RD-Action) group and the 3rd French National Plan for Rare Diseases [15][16][17].…”

“…Previous studies showed that RD knowledge was frequently rated as substandard by physicians from different specialties, especially general practitioners [6][7][8]. Most of them felt that their academic training was insufficient and not useful for diagnosing RDs in daily practice [7][8][9][10][11]. Similarly, several surveys performed in different European countries consistently confirmed a poor knowledge of RDs among medical students, irrespective of the year of study [12][13][14].…”