Rare disease awareness and perspectives of physicians in China: a questionnaire-based study
| Autor: | Zijuan Lu, Jincheng Zhou, Bingzhe Li, Xuefeng Li, Shu Zhang, Li Ou, Xiangyu Zhang, Jianyong Zhang |
|---|---|
| Rok vydání: | 2020 |
| Předmět: |
Male
0301 basic medicine China medicine.medical_specialty Orphan Drug Production Delayed diagnosis Orphan drug 03 medical and health sciences Rare Diseases 0302 clinical medicine Physicians Surveys and Questionnaires Diagnosis medicine Humans Pharmacology (medical) Genetics (clinical) Multinomial logistic regression Newborn screening Questionnaire business.industry Research Infant Newborn Medical school General Medicine 030104 developmental biology Family medicine Medicine business Rare disease 030217 neurology & neurosurgery Healthcare system |
| Zdroj: | Orphanet Journal of Rare Diseases Orphanet Journal of Rare Diseases, Vol 16, Iss 1, Pp 1-9 (2021) |
| DOI: | 10.21203/rs.3.rs-65651/v1 |
| Popis: | Background It is estimated that there are over 16.8 million rare disease patients in China, representing a significant challenge for the healthcare system and society. Rare disease patients often experience delayed diagnosis, misdiagnosis, or improper treatment, which may be due to the lack of rare disease awareness among physicians. Materials and methods A total of 224 physicians from different hospitals in China participated in the questionnaire, and 9 rare disease experts were interviewed with open-ended questions. Results Most physicians (83.5%) were from Tertiary hospitals, which have over 500 beds. Only 5.3% of physicians were moderately or well aware of rare diseases. Most physicians (80.1%) had suspected their patients to have rare diseases less than 3 times. There was a strong support for special legislations for rare diseases and orphan drugs. Further, multinomial logistic regression (MLR) was used to determine whether hospitals, gender, and career length has an impact on perspectives and awareness. It was shown that male physicians were more likely to think newborn screening is important (p Conclusions Our study highlighted the importance of improving rare disease awareness among physicians in China. Recommendations about how to improve rare disease awareness in medical school education and establish an online ‘information hub’ are made for considerations of policy-makers. |
| Databáze: | OpenAIRE |
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