ArticleOrphanet journal of rare diseases2019
Health service security of patients with 8 certain rare diseases: evidence from China's national system for health service utilization of patients with healthcare insurance.
Article in Orphanet journal of rare diseases, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers, 3 of them syntheses that pooled it.
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Who cites it
12 citing papers in PubMed, 3 syntheses or guidelines pooled it, 29 citations in OpenAlex.
- The Economic and Humanistic Burden of Phenylketonuria Among Patients and Their Caregivers: A Systematic Literature Review.PharmacoEconomics - open · 2026Pooled it
- Economic Burden of Multiple Sclerosis in Low- and Middle-Income Countries: A Systematic Review.PharmacoEconomics · 2021Pooled it
- A systematic review of moral reasons on orphan drug reimbursement.Orphanet journal of rare diseases · 2021Pooled it
- A retrospective study of insurance coverage status and economic cost of rare diseases in Hainan Province.Scientific reports · 2025Article
- Incidence and health burden of 20 rare neurological diseases in South China from 2016 to 2022: a hospital-based observational study.Orphanet journal of rare diseases · 2025Observational
- Budget impact analysis of high-priced orphan medicinal products intended for the treatment of rare diseases in China: evidence from a densely populated metropolis of Chengdu.BMC health services research · 2024Article
- Disease Burden and Costs Associated with Multiple Sclerosis in China: A Cross-sectional Analysis of Nationwide Survey Data.Neuroscience bulletin · 2024Article
- Literature Review on Health Emigration in Rare Diseases-A Machine Learning Perspective.International journal of environmental research and public health · 2023Review
- Is sub-national healthcare social protection sufficient for protecting rare disease patients? the case of China.Frontiers in public health · 2023Review
- A Cross-Sectional Study of Price and Affordability of Drugs for Rare Diseases in Shandong Province, China.International journal of environmental research and public health · 2022Article
- Medical expenditure for patients with hemophilia in urban China: data from medical insurance information system from 2013 to 2015.Orphanet journal of rare diseases · 2020Article
- Determining the Topic Evolution and Sentiment Polarity for Albinism in a Chinese Online Health Community: Machine Learning and Social Network Analysis.JMIR medical informatics · 2020Article
Corrections and comments
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Authors and funding
5 authors at 4 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundRare diseases are one of the major challenges in the era of precision medicine and reflect the social security level of minority groups. This study aimed to investigate healthcare service utilization and health security of patients with rare diseases in China.
methodsFrom 29 provinces of Mainland China, 7,747 visits with eight common rare diseases who were linked to the national insurance database between 2014 and 2016 were selected as the study population, whose demographic and healthcare service information was collected from China's national monitoring system for health service utilization of patients with healthcare insurance. Univariate analysis was performed to describe the basic statement of healthcare service, such as visit type, institution type, length of stay, healthcare insurance utilization, and the results of disease burden for different groups and its factors were analyzed by multivariate analysis.
resultsMedical treatment from general tertiary hospitals was sought by 61.4% of the patients with rare diseases. Of the total treatment cost (TTC) of 40.18 million Chinese Yuan, 63.3% was paid by basic health insurance, and 54.2% of the medical cost resulted from medicine expenditure. Demography, geography and social-economic factors, security level, and health institution situation had an effect on the TTC. The correlations between these factors and TTC were different for outpatients and inpatients. Reimbursement rate had the highest effect on inpatients' TTC. Basic insurance was effective for providing support for patients with rare diseases that involved high costs; however, the coverage was limited.
conclusionsHealthcare insurance is an effective safeguard for patients with rare diseases; however, affordable and accessible treatment is still lacking for such patients. There remains a need to further improve the diagnostic and treatment technology for rare diseases and expertise among doctors, as well as the security level of healthcare policies.
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