Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Review
. 2020 Jun 23;15(1):159.
doi: 10.1186/s13023-020-01439-z.

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

S Sanges  1   2   3   4   5 , M-M Farhat  6   7   8   9 , M Assaraf  7 , J Galland  10   11 , E Rivière  12   13 , C Roubille  14   15 , M Lambert  6   7   8   9 , C Yelnik  6   7   8   9 , H Maillard  7   8   9 , V Sobanski  6   7   8   9 , G Lefèvre  6   9   16 , D Launay  6   7   8   9 , S Morell-Dubois  7   8   9 , E Hachulla  6   7   8   9
Affiliations
Review

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

S Sanges et al. Orphanet J Rare Dis. .

Abstract

Background: As lack of awareness of rare diseases (RDs) among healthcare professionals results in delayed diagnoses, there is a need for a more efficient approach to RD training during academic education. We designed an experimental workshop that used role-play simulation with patient educators and focused on teaching "red flags" that should raise the suspicion of an RD when faced with a patient with frequently encountered symptoms. Our objective was to report our experience, and to assess the improvement in learners' knowledge and the satisfaction levels of the participants.

Results: The workshop consisted of 2 simulated consultations that both started with the same frequent symptom (Raynaud phenomenon, RP) but led to different diagnoses: a frequent condition (idiopathic RP) and an RD (systemic sclerosis, SSc). In the second simulated consultation, the role of the patient was played by a patient educator with SSc. By juxtaposing 2 seemingly similar situations, the training particularly highlighted the elements that help differentiate SSc from idiopathic RP. When answering a clinical case exam about RP and SSc, students that had participated in the workshop had a higher mean mark than those who had not (14 ± 3.7 vs 9.6 ± 5.5 points out of 20, p = 0.001). Participants mostly felt "very satisfied" with this training (94%), and "more comfortable" about managing idiopathic RP and SSc (100%). They considered the workshop "not very stressful" and "very formative" (both 71%). When asked about the strengths of this training, they mentioned the benefits of being put in an immersive situation, allowing a better acquisition of practical skills and a more interactive exchange with teachers, as well as the confrontation with a real patient, leading to a better retention of semiological findings and associating a relational component with this experience.

Conclusions: Through the use of innovative educational methods, such as role-play simulation and patient educators, and by focusing on teaching "red flags", our workshop successfully improved RP and SSc learning in a way that satisfied students. By modifying the workshop's scenarios, its template can readily be applied to other clinical situations, making it an interesting tool to teach other RDs.

Keywords: Big data; Medical education; Patient educators; Rare diseases; Raynaud phenomenon; Role play; Simulated patients; Simulation; Systemic sclerosis.

PubMed Disclaimer

Conflict of interest statement

The authors declare that they have no competing interests in relation to this work.

Figures

Fig. 1
Fig. 1
Detailed description of the workshop
Fig. 2
Fig. 2
Comparison of the mean mark obtained on each exam case by the 2014–2015 and the 2018–2019 classes of medical students
Fig. 3
Fig. 3
Participants’ answers to the workshop satisfaction survey
Fig. 4
Fig. 4
Word cloud depicting the strengths of the workshop as reported by the participants (translated from French) Legend: The size of each word is proportional to the frequency of its occurrence in the text of the answers provided by the learners. This picture was created using the website nuagesdemots.fr
See this image and copyright information in PMC

Similar articles

See all similar articles

Cited by

See all "Cited by" articles

References

    1. European Union Committee of Experts on Rare Diseases (EUCERD) 2014 report on the state of the art of rare disease activities in Europe. 2014.
    1. Donnart A, Viollet V, Roinet-Tournay M. Rare diseases, a public health issue. Soins Pediatr Pueric. 2013;1:17–19. - PubMed
    1. Bonne G, Pouget J. Diagnostic odyssey at the heart of the 3rd National Initiative for rare disorders. Med Sci (Paris) 2018;34:5. doi: 10.1051/medsci/201834s201. - DOI - PubMed
    1. European Organisation for Rare Diseases (EURORDIS) Survey of the delay in diagnosis for 8 rare diseases in Europe (‘EURODISCARE 2’): fact sheet. 2007.
    1. European Organisation for Rare Diseases (EURORDIS) The voice of 12,000 patients: experiences and expectations of rare disease patients on diagnosis and Care in Europe - a report based on the EurordisCare2 and EurordisCare3 surveys. 2009.