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Pharmacoeconomic evaluation is the essential supporting information for the inclusion of rare disease drugs into medical insurance in China. The accurate measurement of the health state utility of rare diseas is of practical significance to the development of rare disease pharmacoeconomic evaluation. Based on the review of pharmacoeconomic evaluation requirements for rare diseases in some countries/regions, we systematically retrieved the published studies on the measurement of health state utility for 121 rare diseases in China and other countries and regions. We identified 17 591 papers in the initial review, and later selected 230 after screening. We also made a comprehensive analysis of the quality of literature, evaluation content and use of tools for measuring health state utility in rare diseases in China. Finally, we analyzed the challenges in measurement in terms of population, instruments use, and application of results and made recommendations based on analysis, hoping to provide reference for the development of rare disease health state utility measurement studies in China.
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OBJECTIVE To systematically sort out and evaluate the health state utility of hemophiliac patients, and to provide reliable parameters for conducting pharmacoeconomic evaluation and health technology assessment. METHODS Retrieved from CNKI, Wanfang data, VIP, CBM, PubMed, Embase, the Cochrane Library, Scopus and Web of Science databases, relevant literature about the measurement of health state utility in hemophiliac patients was collected from the inception to February 2023. After screening literature, extracting data and evaluating the quality of literature, meta-analysis was performed for health state utility with Stata 15.1 software. RESULTS Thirty-eight papers were finally included, with the highest and lowest health utility values of 0.90 and 0.46, respectively. Those studies mostly adopted the EuroQol Five Dimensions Questionnaire (EQ-5D) (73.7%). Results of meta-analysis showed that health state utility of global hemophiliac patients was 0.69,95% confidence interval was 0.65- 0.74; those of patients with mild, moderate and severe hemophilia were 0.79, 0.70, and 0.64, respectively; health state utility for patients with inhibitors (0.64) was lower than that of patients without inhibitors (0.69); health state utility for the Chinese patient population was 0.55, which was higher than that of Iranian patients (0.46), but lower than those of other developed countries. CONCLUSIONS There is some heterogeneity in the results of the studies across countries/regions, with higher health state utility in developed countries than in developing countries. As the severity of hemophilia increases, the trend of decreasing health state utility is obvious.
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Objective:To conduct stakeholder identification and problem analysis of inclusive health insurance participation in rare disease coverage based on the stakeholder perspective.Methods:A literature review and a Mitchell scale were used to identify,categorize,and analyze the relationship among the stakeholders,and qualitative interviews were conducted with identified stakeholders to explore their demands,positioning,and barriers to participation in inclusive health insurance.Results:The Healthcare Security Ad-ministration,Banking and Insurance Regulatory Commission,and the primary insurer were the most influential"identified stakehold-ers"in the development of inclusive health insurance.A total of 63 concepts were coded,and the stakeholders were analyzed and de-scribed in categories of claims,roles,strengths,difficulties,and behavioral strategies.Conclusion:There were differences in the de-mands of the stakeholders,lack of clarity of roles,and lack of effective synergy.
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Based on the ideas of management systemization, system standardization, process specialisation, post accountability, duty formalization, form informatization, information digitization and digital intelligence, the smart, mobile and paperless bedside billing service was developed which incorporated both functional and financial prospects. The innovation was realized by Internet+ bedside billing and an integrated information platform, so that the inter-hospital billing system could be connected to the medical insurance system, electrical receive system and commercial insurance system. This saved manpower and equipment deployment, and improved service quality. The bedside intelligent mobile billing system of a hospital was launched in January 2021, and the average discharge billing time of inpatients in 2020 and 2021 was 44.36 min and 30.59 min, respectively, and the online billing fee time was significantly shorter than offline billing in 2021, and the differences were all significant( P<0.01).
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At present, the diagnosis, treatment, and social security of rare diseases have attracts social attention. As an important part of the multi-level health insurance system in China, commercial health insurance plays an increasingly important role in the supplement to basic medical insurance. Moreover, recently, the benefits of new healthcare reform policies have provided much room and great opportunities for the application of commercial health insurance for rare disease.This paper presents current medical insurance for patients with rare diseases and discuss the necessity and feasibility of bringing rare diseases into the coverage of commercial health insurance, and analyzes the current application and the potential problems of rare disease insurance in the commercial health insurance. This article also gives suggestions to the policies to make full use of the positive role of commercial insurance for the completion of multi-level health insurance system for rare disease.
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We have analyzed the current status of recognization and qualification of orphan drugs in China and abroad, looking at the aspects of the authority institutions, identification and qualification process, and the number of orphan drugs identified and available in the market. By comparing and analyzing horizontally the differences in orphan drugs identification between representative developed countries vs. some developing countries, we discuss the inadequacy of orphan drugs supervision in China. We introduce the advanced experience from the developed countries and some developing countries to provide suggestions for the identification and management of orphan drugs, hoping to speed up the process of development and market availability of orphan drugs and to maximize patient's accessibility to treatment in China.
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To solve the problems of long waiting time for outpatients, difficulty on implementation of one patient one room initiative, backward appointment method on examination, and imperfect instruction and guidance, a series of fine management measures have been taken place in a tertiary hospital which included dividing the patient waiting queue reasonably, establishing the patient secondary consultation system, improving the outpatient order of two-way management between doctors and patients, establishing one key appointment system for examinations, building hospital intelligent navigation system, and implementing outpatient payment and self-service drug delivery.The results showed, the waiting time of outpatients was significantly shortened ( P<0.001), and the satisfaction of patients in waiting time, hospital guidance and appointment registration was significantly improved ( P<0.05). Fine management mode combining online and offline can effectively increase the efficiency of outpatient service, improve clinical experience, and facilitate the high-quality development of medical services.
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Objective@#To explore the treatment technique, occurrence and development patterns of such radiation injuries as in a major radiological accident in which a victim suffered mild bone marrow radiation sickness combined grade degree Ⅲ acute radiation induced skin injury, based on his dose estimation, clinical manifestations and disease treatments.@*Methods@#History inquiry in detail, earlier physical dose estimation and biological dose estimation were conducted in conjunction with analyzing the chromosome aberration of peripheral blood lymphocytes. The physical dose was estimated by Monte Carlo method.The systematic laboratory and imaging examination was performed to evaluate the condition. The comprehensive analysis was conducted to determine the diagnosis and treatment plan.@*Results@#At 3d after the exposure, "Ren" felt mild pain and discomfortable on the skin of the right index finger. The body of the right hand index finger was covered with blister at 21 d after exposure.The estimation of biological dose was 0.43 Gy (95%CI: 0.31-0.58 Gy), and the physical dose was estimated to be 36-164 Gy for each part of the right hand finger. The hematopoietic system, immune system and endocrine system were normal. The liver function index value was transiently increased. The liver damage resulted from the use of antibiotic-induced combined with the patient′s past medical history and admission examination result, and the relevant antibiotics were discontinued. The liver function returned to normal after liver protection treatment. At 22 d after irradiation, a right finger incision and decompression surgery were performed. The stem cells were extracted and implanted into the right index finger. After 59 days of hospitalization, there was no obvious discomfort in the body, and the right index finger recovered well, as well as the pain significantly relieved, and the knuckle activity was basically normal.@*Conclusions@#The patient with excessive radiation and grade Ⅲ acute radiation skin injury was successfully treated, and local application of autologous adipose-derived stem cell transplantation achieved good result .
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Objective To investigate a dose response curve based on a genetic workstation with automatic analysis system of dicentric chromosome assay (DCA) for establishing a high speed dose estimation method.Methods Peripheral blood from three healthy volunteers was irradiated in vitro using 60Co γ-rays,and then lymphocytes were cultured and fixed on slides using the standard protocol for DCA.Dicentric chromosome in metaphase cells was analyzed automatically with the genetic workstation and confirmed manually,and the dose response curve of automated dicentric chromosome was fitted.Dicentric chromosome of another peripheral blood sample irradiated with different doses was manually analyzed to verify the accuracy of the above automated DCA.Results The yield of automated DCA was well fitted by an equation Y =0.018 06D2 + 0.012 79D + 0.000 489 1 with a correlation coefficient R2 =0.961.The biological dose of radiation could be accurately estimated by this dose response curve within a few minutes.Conclusions We had successfully established a new dosimetry method by analyzing dicentric chromesome automatically,which can save a lot of manual analysis time and hence has important significance for emergency rescue in nuclear accidents.
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Objective To use three different methods in attempt to estimate the biological dose of the patient partially exposed to 192Ir source at5.7 accident in Nanjing,so as to provide dosimetric information for clinical remedy of exposed patients in the emergency of a nuclear accident.Methods Peripheral blood samples were collected on days 5 after exposure.The biological dose was estimated by the yields of dicentrics plus rings ( dic + r),cytokinesis-block micronuclei (CBMN) assay and nucleoplasmic bridge plus FHC (NPB + FHC).The homogeneity of radiation exposure was examined by Poisson distribution of dicentrics.Results By using three different methods,the whole body equivalent dose was dic + r estimated to be 1.51 Gy (95% CI 1.40-1.61),1.47 Gy (95% CI 1.36-1.60) by CBMN and 1.30 Gy (95% CI 1.00-1.60) by NPB + FHC,respectively.A non-poisson distribution was also detected,suggesting partial body radiation exposure.Conclusions The estimated whole body equivalent dose ot a non-uniform radiation exposure was consistent with clinical diagnosis,suggesting that the yields ofdic + r,CBMN,as well as NPB + FHC,are efficient approaches to the estimation of biological doses.
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Objective To explore the natural attenuation pattern of three biological dose estimation indexes in vivo by investigating the effect on biological dosimetry of peripheral blood sampling at different time points from the victim partially exposed to 192Ir radiation source at5.7 accident in Nanjing.Methods Peripheral blood of the patient was collected on days 5,40 and 280 after exposure,respectively.The yields of dicentrics plus rings chromosomes (dic + r),cytokinesis-block micronuclei (CBMN) and nucleoplasmic bridge + fusion + horse shoe + circular(NPB + FHC) were analyzed.The dynamic reduction and dose estimation were both observed using the biomarkers mentioned above after exposure.Results Compared to the estimates on days 5 after exposure,the dose values estimated on days 40 and 280 decreased by 34% and 49% fordic + r method,48% and 79% for the CBMN assay,and 48% and 75% for NPN + FHC method,respectively.Conclusions Three biological dose estimation indexes show a progressive decrease in vivo,with the half-life of dic + r/cell being 40 days.The doses estimated using these three indexes on days 40 after exposure showed a relative deviation more than 20% compared with those on days 5 after exposure.