From: Poor education and urgent information need for emergency physicians about rare diseases in China
Items | N | % |
---|---|---|
Would you like to know more about rare diseases? | ||
 Yes | 497 | 92.21% |
 No | 4 | 0.74% |
 I'm not sure | 38 | 7.05% |
The reasons delaying the diagnosis of rare disease | ||
 Lack of practice guidelines or consensus | 450 | 83.49% |
 Do not know how to find relevant professional websites | 271 | 50.28% |
 Do not know a hospital or specialist that I can refer to | 252 | 46.75% |
 Lack of material or official account to disseminate to patients or their family | 225 | 41.74% |
 Do not know a hospital or specialist for genetic counselling | 277 | 51.39% |
Which aspect of rare diseases do you prefer to learn more about? | ||
 Practice guidelines or consensus | 466 | 86.46% |
 Relevant professional websites | 370 | 68.65% |
 A hospital or specialist that I can refer to | 308 | 57.14% |
 Material or official account to disseminate to patients or their family | 267 | 49.54% |
 A hospital or specialist for genetic counselling | 271 | 50.28% |
Which specialty needs more in-depth training on rare diseases? | ||
 Paediatrician | 156 | 28.94% |
 General practitioner | 212 | 39.33% |
 Neurologist | 110 | 20.41% |
 Geneticist | 186 | 34.51% |
 Physician | 139 | 25.79% |
 Emergency physician | 254 | 47.12% |
 Every physician regardless of specialization | 276 | 51.21% |
 Other | 9 | 1.67% |
 None | 4 | 0.74% |
Is it necessary to add a course on rare disease to your medical school education? | ||
 Yes | 475 | 88.13% |
 No | 32 | 5.94% |
 Depends on the course content | 32 | 5.94% |