Abstract

BackgroundRare diseases may be defined as occurring in less than 1 in 2000 patients. Such conditions are, however, so numerous that up to 5.9% of the population is afflicted by a rare disease. The gambling industry attests that few people have native skill evaluating probabilities. We believe that both students and academics, under-estimate the likelihood of encountering rare diseases. This combines with pressure on curriculum time, to reduce both student interest in studying rare diseases, and academic content preparing students for clinical practice. Underestimation of rare diseases, may also contribute to unhelpful blindness to considering such conditions in the clinic.MethodsWe first developed a computer simulation, modelling the number of cases of increasingly rare conditions encountered by a cohort of clinicians. The simulation captured results for each year of practice, and for each clinician throughout the entirety of their careers. Four hundred sixty-two theoretical conditions were considered, with prevalence ranging from 1 per million people through to 64.1% of the population. We then delivered a class with two in-class on-line surveys evaluating student perception of the importance of learning about rare diseases, one before and the other after an in-class real-time computer simulation. Key simulation variables were drawn from the student group, to help students project themselves into the simulation.ResultsThe in-class computer simulation revealed that all graduating clinicians from that class would frequently encounter rare conditions. Comparison of results of the in-class survey conducted before and after the computer simulation, revealed a significant increase in the perceived importance of learning about rare diseases (p < 0.005).ConclusionsThe computer career simulation appeared to affect student perception. Because the computer simulation demonstrated clinicians frequently encounter patients with rare diseases, we further suggest this should be considered by academics during curriculum review and design.

Highlights

  • Rare diseases may be defined as occurring in less than 1 in 2000 patients

  • Anecdotally some senior and sometimes specialist clinicians seem to reinforce student doubt, with comments suggesting that students are highly unlikely to encounter a range of rare conditions in general practice; this despite referrals to specialists often being from general practitioners

  • We argue that when students seek to balance the effort of studying rare diseases, against the need to acquire other clinically important knowledge, there is an underestimation of the relevant probabilities, and unhelpful skewing of learning away from otherwise important content

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Summary

Introduction

Rare diseases may be defined as occurring in less than 1 in 2000 patients Such conditions are, so numerous that up to 5.9% of the population is afflicted by a rare disease. The gambling industry attests that few people have native skill evaluating probabilities We believe that both students and academics, under-estimate the likelihood of encountering rare diseases. This combines with pressure on curriculum time, to reduce both student interest in studying rare diseases, and academic content preparing students for clinical practice. The problem of sufficient awareness of students and clinicians to consideration of rare diseases has been noted by others [1,2,3,4,5,6,7,8,9], students frequently express doubt on the value of learning about rare diseases [10]. While rare diseases may be uncommon, they are many in number, so that from 3.5 to 5.9% of the population is thought to suffer a rare disease at any point in time [12]

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