title: The Patient Educator Presentation in Dental Education: Reinforcing the Importance of Learning About Rare Conditions.
abstract: The aim of this study was to determine whether a patient educator presentation (PEP) on pemphigus vulgaris would increase second-year dental students' awareness of the importance of learning about rare conditions and improve their retention of rare disease knowledge. The study involved students' subjective assessments of a PEP experience at two U.S. dental schools. In this mixed methods study, cross-sectional data were obtained by surveys and in-depth interviews. Questions focused on students' assessment of the messages acquired from the PEP and its likely impact on their future clinical care. At University 1, students completed paper surveys with open-ended questions and participated in a focus group. At University 2, students completed an online survey consisting of rating scale and open-ended questions. Responses to open-ended questions were categorized into themes. At University 1, 79 students (out of a possible 102; response rate 77.5%) completed the survey, and an additional ten students participated in a focus group. At University 2, 30 students (out of a possible 104; response rate 28.8%) completed the survey. At Universities 1 and 2, 88% and 100%, respectively, of respondents stated the PEP would influence their future clinical decision making. The vast majority of respondents (94% and 100% at University 1 and University 2, respectively) were of the opinion that the personal testimonial from a patient would help them recall information about pemphigus vulgaris in five years' time. Respondents from both universities commented that the PEP emphasized the importance of not dismissing a patient's concerns. These results suggest that a presentation by a patient with a rare condition can be an effective educational tool for preclinical dental students.
authors.affiliation: Dr. Edwards is Professor, Department of Oral Pathology, Medicine, and Radiology, Indiana University School of Dentistry; Ms. Graham is Content and Curriculum Intern, International Pemphigus & Pemphigoid Foundation, Sacramento, CA; Ms. Oling is Coordinator of Instruction and Literature Librarian, Purchase College, State University of New York; and Ms. Frantz is Awareness Program Manager, International Pemphigus & Pemphigoid Foundation. pcedward@iu.edu.
authors.forename: Paul C
authors.initials: PC
authors.lastname: Edwards
authors.affiliation: Dr. Edwards is Professor, Department of Oral Pathology, Medicine, and Radiology, Indiana University School of Dentistry; Ms. Graham is Content and Curriculum Intern, International Pemphigus & Pemphigoid Foundation, Sacramento, CA; Ms. Oling is Coordinator of Instruction and Literature Librarian, Purchase College, State University of New York; and Ms. Frantz is Awareness Program Manager, International Pemphigus & Pemphigoid Foundation.
authors.forename: Jasmine
authors.initials: J
authors.lastname: Graham
authors.affiliation: Dr. Edwards is Professor, Department of Oral Pathology, Medicine, and Radiology, Indiana University School of Dentistry; Ms. Graham is Content and Curriculum Intern, International Pemphigus & Pemphigoid Foundation, Sacramento, CA; Ms. Oling is Coordinator of Instruction and Literature Librarian, Purchase College, State University of New York; and Ms. Frantz is Awareness Program Manager, International Pemphigus & Pemphigoid Foundation.
authors.forename: Rebecca
authors.initials: R
authors.lastname: Oling
authors.affiliation: Dr. Edwards is Professor, Department of Oral Pathology, Medicine, and Radiology, Indiana University School of Dentistry; Ms. Graham is Content and Curriculum Intern, International Pemphigus & Pemphigoid Foundation, Sacramento, CA; Ms. Oling is Coordinator of Instruction and Literature Librarian, Purchase College, State University of New York; and Ms. Frantz is Awareness Program Manager, International Pemphigus & Pemphigoid Foundation.
authors.forename: Kate E
authors.initials: KE
authors.lastname: Frantz
mesh_terms: D004497:Education, Dental / Q000379:methods*; D006801:Humans; D010361:Patients; D010392:Pemphigus; D035583:Rare Diseases; D057566:Self Report
keywords: dental education; oral pathology; orphan diseases; patient educator; pemphigus; rare diseases