Evaluating the Amyloidosis Speakers Bureau: the influence of amyloidosis patients’ narratives on medical students’ knowledge, attitudes, and behavioral intent

Background: Amyloidosis is a complex multi-systemic disease. Lack of knowledge about amyloidosis and subsequent mis- or under-diagnosis are major obstacles to treatment, which result in life-threatening organ damage, morbidity, and mortality. Hence, the purpose of this study is to explore the effectiveness of amyloidosis patients' narratives on medical students. Methods: The Amyloidosis Speakers Bureau (ASB) arranges for amyloidosis patients to speak about their diagnostic and treatment experiences with medical students. Using a randomized post-test only experiment, we compared the effectiveness of patients' narratives between two groups (treatment and control). Outcome measures included medical students' intent to actively communicate with patients, acquire knowledge about amyloidosis, and reconsider diagnoses when warranted. Results: The treatment group (those who listened to an ASB patient speaker) had higher mean differences on all measures, including the desire to improve communication with patients, acquire and apply knowledge of amyloidosis, and willingness to reconsider diagnoses when symptoms are puzzling. Conclusions: ASB patient educators widened awareness of an under-diagnosed disease. Listening to a patient's narrative was associated with positive attitudes toward communication with patients, interest in acquiring and applying knowledge of amyloidosis, and humility about diagnosis. Narrative and persuasion theory are used to explain this quantitative evidence of the power of patient narratives.