Integrating the Rare Disease Context into Medical Training Models

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Bruce-Lepage, Celine
Rare Disease , Education , Medical Education , Prader Willi Syndrome
Patient centred care (PCC) and evidence-based medicine (EBM) are cornerstones in the education of primary care providers. While teaching these approaches are intended to improve patient care, EBM and PCC were not developed with rare disease (RD) in mind, and therefore the tenets of those models may not hold up as expected in the treatment of RD. In the RD context patients are often more informed about both the disease and illness experience (Babac et al., 2019); there are rarely guidelines to evaluate, and physicians often have very limited knowledge about the disease. This presents a new problem to the current notions of expertise and care. The purpose of this research is to obtain caregiver perspectives about RD healthcare management and how those perspectives can improve RD healthcare by better integrating the RD context into existing models used in medical training (i.e. PCC and EBM). This study used a Qualitative Descriptive Design (Sandelowski, 2000) and data was collected through twelve semi-structured interviews. The analysis and the results, represent a complex interrelated system where a parent must navigate, learn, and manage their way through to secure high quality care. The findings in this study could inform the overall system in RD healthcare.
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