Assessing knowledge, perceptions, awareness and attitudes on rare diseases among health care providers and health students in Mexico

Rare Pub Date : 2023-01-01 DOI:10.1016/j.rare.2023.100005

Benjamín Gómez-Díaz , Edgar Oswaldo Zamora-González , Antonio Miranda-Duarte , Bladimir Roque-Ramírez , Norma Alejandra Vázquez-Cárdenas , Georgina Martínez-Gómez , Jhoana Martín del Campo , Erick Castillo-Jáuregui , Ángel Rafael Castro-Navarro , Antonio Marín-Cruz , Stephanie Rosas-Maldonado , Paulina Elizabeth Valdez-Anguiano , Reyna Araceli Barrera-López , Luz Berenice López-Hernández

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Abstract

Rare diseases (RDs) are serious and often fatal uncommon conditions with a high subjacent genetic origin. Since RD are not prevalent, knowledge regarding these diseases among health care providers and health students is scarce. The management of RD is often inadequate and precarious. Therefore, the aim of the present study is to assess the degree of knowledge, perceptions and attitudes of healthcare practitioners and students in Mexico. Herein we present a reliable questionnaire to assess the degree of knowledge, perceptions, awareness and attitudes of healthcare practitioners and students in Mexico with regard to RDs. The pilot study showed satisfactory levels of knowledge and significant differences in perceptions, awareness and attitudes among the study groups.

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评估墨西哥卫生保健提供者和卫生专业学生对罕见病的知识、观念、认识和态度

罕见病(RDs)是一种严重且往往致命的罕见疾病，具有高度的隐性遗传起源。由于RD并不普遍，卫生保健提供者和卫生专业学生对这些疾病的了解很少。研发的管理往往是不充分和不稳定的。因此，本研究的目的是评估知识的程度，看法和态度的卫生保健从业者和学生在墨西哥。在此，我们提出了一个可靠的问卷来评估知识程度，看法，认识和态度的卫生保健从业人员和学生在墨西哥关于rd。初步研究表明，各研究组的知识水平令人满意，在观念、认识和态度方面存在显著差异。

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