scholarly journals 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

2020 ◽  
Vol 15 (1) ◽  
Author(s):  
S. Sanges ◽  
M.-M. Farhat ◽  
M. Assaraf ◽  
J. Galland ◽  
E. Rivière ◽  
...  
2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1927.1-1928
Author(s):  
S. Sanges ◽  
S. Morell-Dubois ◽  
M. M. Farhat ◽  
M. Assaraf ◽  
M. Lambert ◽  
...  

Background:Systemic autoimmune diseases are mostly taught through theoretical lectures, which do not allow for the acquisition of physical examination skills and semiologic confrontation.Objectives:We report herein the results of a pilot experiment using role-play to teach how to manage patients with Raynaud phenomenon (RP).Methods:We developed a workshop that consisted of two 30-minute OSCE (Objective and Structured Clinical Examination) stations. Students were divided into groups of 4 to 5 persons. On each station, 2 students were actors and 2 were observers. After a short briefing, students played a 15-minute scenario and then had a 15-minute debriefing.The first station simulated the case of a 26-year old woman referred for suspected RP. Students were instructed to perform clinical history taking and physical examination of the patient, formulated relevant diagnosis hypotheses and prescribe any additional necessary exams. Students had to suspect the diagnosis of idiopathic RP. The simulated patient was played by a trained facilitator with expertise on RP.The second station simulated the case of a 56-year-old woman referred for RP complicated by digital ulcers. Students received the same instructions as before. They had to suspect the diagnosis of systemic sclerosis. The patient role was held by a real patient with systemic sclerosis, followed by the physician who was supervising the station, who had received prior training and who agreed to participate in this training.At the end of the workshop, the students had to complete a satisfaction questionnaire.Results:A total of 21 students participated in the workshop and 17 completed the survey. The students were “very satisfied” (Likert 4/4) of this training in 94%. They considered this workshop “not very stressful” (Likert 2/4) and “very formative” (Likert 4/4) in 71%, but “a little short” (Likert 2/4) in 88%. After taking this training, all students felt “a little” (Likert 3/4, 24%) or “much more comfortable” (Likert 4/4, 76%) to manage patients with idiopathic RP; and “a little” (Likert 3/4, 65%) or “much more comfortable” (Likert 4/4, 35%) to manage patients with systemic sclerosis. All would recommend this workshop to other students.When asked about the strengths of this training, the students mentioned the benefits of being put in an immersive situation, which allowed for a better acquisition of practical skills (especially physical examination) and a more interactive exchange with teachers; as well as the confrontation with a real patient, which allowed for a better retention of semiologic findings and associated a relational component to this experience. The main weak points reported were its short duration and the stress induced by being observed during the simulation.Conclusion:This workshop suggests the interest and feasibility on a small group of students of a rare diseases awareness workshop using role-play. The evaluation of its pedagogical efficiency and its generalization on large student promotions are being considered.Acknowledgments:NoneDisclosure of Interests:Sebastien SANGES: None declared, Sandrine Morell-Dubois: None declared, Meryem-Maud Farhat: None declared, Morgane Assaraf: None declared, Marc Lambert: None declared, Vincent Sobanski: None declared, David Launay Grant/research support from: Dr. Launay reports personal fees from Actelion, grants and personal fees from Takeda, grants and personal fees from CSL Behring, outside the submitted work., Eric Hachlla: None declared


Author(s):  
María Ahijón-Lana ◽  
Elia Baragaño-Ordóñez ◽  
Raúl Veiga-Cabello ◽  
Carmen de la Cruz-Tapidor ◽  
Patricia E. Carreira

2013 ◽  
Vol 8 (1) ◽  
pp. 6-40 ◽  
Author(s):  
Kati Vapalahti ◽  
Miika Marttunen ◽  
Leena Laurinen

This paper reports on a teaching experiment in which social work students (n=38) practiced problem solving through argumentative tasks. A teaching experiment was carried out at a Mikkeli University of Applied Sciences in Finland in connection with a course concerning preventative work against alcohol- and drug abuse. This quasi- experimental study investigated whether role-play simulation conducted either online (15 students) or face-to-face (14 students) improved students’ problem solving on social issues. As a pre-test, the students wrote an essay after having watched a dramatization of problematic cases on elderly people’s use of alcohol. The students also attended lectures (30 x 45 min) on the effect of substance abuse and preventive work, and after the role-play simulation they wrote another essay (post-test). Nine controls wrote an essay without participating in the role-play simulation. Lastly, the students filled out feedback questionnaires.


2020 ◽  
pp. jrheum.191371
Author(s):  
Julie Thomas ◽  
Mislav Radic ◽  
Jordan R. Tucker ◽  
Rebecca Overbury ◽  
Tracy M. Frech

Objective Early diagnosis of systemic sclerosis (SSc) is imperative, and Raynaud phenomenon (RP) is an important component of progressive vasculopathy. Nailfold videocapillaroscopy (NVC) is a well-established tool that can quantify structural vascular abnormalities. Digital thermal monitoring (DTM) assesses microvascular functional dysfunction related to thermoregulation. In this study, we investigated the correlation of NVC patterns and DTM variables in patients with SSc. Methods Patients with SSc according to the 2013 American College of Rheumatology/European League Against Rheumatism criteria who consented and enrolled in the clinical care registry had NVC and DTM performed. For NVC, the number of capillaries (density), measurement of apical diameter (dimension), presence or absence of hemorrhages, and number of abnormal shapes were assessed to categorize 3 different qualitative patterns: early, active, and late. For DTM, Doppler ultrasound hyperemic, low frequency, blood velocity of radial artery, and fingertip vascular function were assessed, and a vascular reactivity index (VRI) measurement was automated. Statistical evaluation was performed by nonparametric tests to assess the correlation of NVC and VRI. Results Thirty-one SSc subjects with interpretable NVC and DTM performed on the same day were included in the study. VRI was progressively higher in SSc patients with early, active, and late NVC patterns of microangiopathy (P < 0.0001). There was a significant negative correlation between VRI and microhemorrhages scores (r = –0.363, P = 0.044). Conclusion Our study suggests that more advanced vasculopathy correlates to reduced microvascular function as detected by DTM and more advanced structural abnormalities detected by NVC. NVC and DTM may provide different aspects of vasculopathy quantification and complement each other as investigative tools.


2014 ◽  
Vol 38 (5) ◽  
pp. 204-210 ◽  
Author(s):  
Aaron K. Vallance ◽  
Ashish Hemani ◽  
Victoria Fernandez ◽  
Daniel Livingstone ◽  
Kerri McCusker ◽  
...  

Aims and methodTo develop and evaluate a novel teaching session on clinical assessment using role play simulation. Teaching and research sessions occurred sequentially in computer laboratories. Ten medical students were divided into two online small-group teaching sessions. Students role-played as clinician avatars and the teacher played a suicidal adolescent avatar. Questionnaire and focus-group methodology evaluated participants' attitudes to the learning experience. Quantitative data were analysed using SPSS, qualitative data through nominal-group and thematic analyses.ResultsParticipants reported improvements in psychiatric skills/knowledge, expressing less anxiety and more enjoyment than role-playing face to face. Data demonstrated a positive relationship between simulator fidelity and perceived utility. Some participants expressed concern about added value over other learning methods and non-verbal communication.Clinical implicationsThe study shows that virtual worlds can successfully host role play simulation, valued by students as a useful learning method. The potential for distance learning would allow delivery irrespective of geographical distance and boundaries.


2020 ◽  
Vol 99 (10) ◽  
pp. NP111-NP118
Author(s):  
Weifang Wang ◽  
Hong Hu ◽  
Mei Liu ◽  
Jianxin Wang

Tracheobronchopathia osteochondroplastica (TO) is a rare disease. Here, we report 5 TO cases treated at our hospital. Bronchoscopy showed typical multiple firm and glossy nodules in all the 5 cases. Conservative treatment effectively alleviated the symptoms. Tracheobronchopathia osteochondroplastica is a manageable disease. Awareness in clinicians is critical to avoid unnecessary treatment in patients with TO.


2018 ◽  
Vol 29 (2) ◽  
pp. 70-72
Author(s):  
ASMM Rahman ◽  
MB Uddin

Juvenile systemic sclerosis (JSS) is a multisystem disorder as well as rare disease of childhood, and the amount of published data is limited. It appears that its clinical presentation differs from adult disease and the limited form affects only very few children. The organ involvement pattern differs also from the adult form. Prognosis seems to be better with a 5-yr survival of 95% of the JSS patients. Though the incidence is very rare but we describe a 10-yr-old boy who presented with typical features of JSS.TAJ 2016; 29(2): 70-72


2020 ◽  
Vol 15 (1) ◽  
Author(s):  
Xuefeng Li ◽  
Zijuan Lu ◽  
Jianyong Zhang ◽  
Xiangyu Zhang ◽  
Shu Zhang ◽  
...  

Abstract Background Each rare disease only affects a small number of population. However, a total of 7000 rare diseases may affect 10% of the population. Due to the severity and lack of rare disease awareness, rare disease represents a huge challenge for the healthcare system. In Western countries, patient organizations have been playing an integral role in raising awareness, advocating legislation, and supporting drug development. This study aims to assess the unmet needs of rare disease patient organizations in China, and identify their unmet needs, providing essential information for the government and legislators. Results A total of 28 individuals representing 28 patient organizations in China were interviewed. Most organizations do not have official registration, employees, written standard operation protocol, or reliable financial resources. Misdiagnosis or delayed diagnosis is common, and treatment is often lacking. Due to the lack of financial resources, no organizations have been able to sponsor academic research, unlike their counterparts in Western countries. As to challenges, 71.4% of interviewees listed lack of rare disease awareness among the general public, while 67.9% selected lack of financial resources. Further, only 7.3% of these organizations received support from the government, and 28.6% received support from the general public. As to recommendations to the government, 82.1% of interviewees selected special insurance programs for rare diseases because rare diseases have been generally excluded from the national medical insurance programs. In addition, 78.6% of interviewees recommended to stimulate rare disease research, 75% recommended to import orphan drugs, and 71.4% recommended legislation of an orphan drug act, highlighting the urgent need of therapies. Conclusions Due to lack of support and rare disease awareness, patient organizations in China are still in the early phase. To empower these patient organizations, the interviewees’ recommendations, including legislating orphan drug act and releasing official definition of rare diseases, should be considered by the government and legislators.


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