ReviewOrphanet journal of rare diseases2020
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.
Review in Orphanet journal of rare diseases, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers.
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Who cites it
12 citing papers in PubMed, 24 citations in OpenAlex.
- Lived Experiences of Patients With Rare Diseases and Healthcare System Barriers: A Phenomenological Study.Journal of nursing management · 2026Article
- Factors associated with diagnostic delay and specialty consultation patterns in systemic sclerosis: A cross-sectional study.Rheumatology international · 2025Article
- Rare disease education in medical schools: patient-centered and innovative strategies.Orphanet journal of rare diseases · 2025Article
- Rare disease 101: an online resource teaching on over 7000 rare diseases in one short course.Orphanet journal of rare diseases · 2024Article
- Simulation-Based Education as a Solution to Challenges Encountered with Clinical Teaching in Nursing and Midwifery Education in Malawi: A Qualitative Study.Journal of nursing management · 2024Article
- Activities of Clinical Expertise and Research in a Rare Disease Referral Centre: A Place for Telemedicine beyond the COVID-19 Pandemic?Healthcare (Basel, Switzerland) · 2023Article
- Barriers to care in juvenile localized and systemic scleroderma: an exploratory survey study of caregivers' perspectives.Pediatric rheumatology online journal · 2023Article
- Rare disease education in Europe and beyond: time to act.Orphanet journal of rare diseases · 2022Article
- Iranian future healthcare professionals' knowledge and opinions about rare diseases: cross-sectional study.Orphanet journal of rare diseases · 2022Article
- Prevalence of Raynaud's Phenomenon in Saudi Arabia.Open access rheumatology : research and reviews · 2022Article
- Big Data for Biomedical Education with a Focus on the COVID-19 Era: An Integrative Review of the Literature.International journal of environmental research and public health · 2021Review
- Study to Investigate the Knowledge of Rare Diseases among Dentists, Orthodontists, Periodontists, Oral Surgeons and Craniomaxillofacial Surgeons.International journal of environmental research and public health · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
14 authors at 5 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundAs 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.
resultsThe 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.
conclusionsThrough 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.
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