Health service utilization, economic burden and quality of life of patients with mucopolysaccharidosis in China
The results highlight challenges faced by MPS patients in terms of diagnosis, access to specific treatments, economic burden and low HRQoL. There is an urgent need to improve early detection and diagnosis, create fair and consistent mechanisms to increase access to specialized treatment and reduce the economic burden of MPS patients in China.
Authors
- Yuhang Fang (ORCID: https://orcid.org/0000-0001-9323-812X)
- Dingguo Li
- Xinyi Chen (ORCID: https://orcid.org/0000-0001-9320-2418)
- Qi Kang (ORCID: https://orcid.org/0000-0002-4088-2760)
- Xiaowen Tu (ORCID: https://orcid.org/0009-0002-4122-4951)
- Zheng Lin (ORCID: https://orcid.org/0000-0003-2357-0535)
- Chunlin Jin
- Yan Yang (ORCID: https://orcid.org/0009-0006-7177-1111)
Institutions
- Chinese National Human Genome Center (CN)
- Shanghai Medical Information Center (CN)
- Shanghai University of Traditional Chinese Medicine (CN)
- Beijing Open University (CN)
- Shanghai Municipal Center For Disease Control Prevention (CN)
Publication Details
- Journal
- Orphanet Journal of Rare Diseases
- Published
- 2024-09-06
- DOI
- https://doi.org/10.1186/s13023-024-03333-4
- Citations
- 6
- Primary Topic
- Lysosomal Storage Disorders Research
- Type
- article
- Field-Weighted Citation Impact
- 1.96
Funders
- Sanofi
- Chinese Medical Association
- Sanofi China Investment Company