| Objectives:Objective to study the disease burden of rare neurological diseases patients in Shanghai from the aspects of disease economic burden and health-related quality of life and explore their influencing factors respectively.To establish a security system for patients with rare diseases in Shanghai,which remains committed to the peoplecentered philosophy of development,and aims at protecting the most basic rights of survival and development of patients,and takes the layout of "one theory,three subjects and four elements".By analyzing the current situation and finding out the problems and deficiencies,this paper provides suggestions for further improving and implementing relevant policies of the insurance system for patients with rare diseases in Shanghai,and provides references for the construction of the insurance system for patients with rare diseases in China.Methods:The method of snowball sampling was adopted in this study.132 patients with rare neurological diseases including Amyotrophic Lateral Sclerosis(ALS),Spinal Muscular Atrophy(SMA),Neuromyelitis Optica(NMO),Multiple Sclerosis(MS)and Duchenne Muscular Dystrophy(DMD)were selected as the research objects.Five aspects of demographic characteristics,social security status,medical characteristics,economic status and social support status of patients were investigated and collected by issuing network questionnaire and telephone return visit.Rate and percentage were used to describe classification variables,and M(P25,P75)was used to describe continuous variables that did not obey normal distribution.In univariate analysis,chi square test,ANOVA and nonparametric test were used to analyze the variables.Multiple logistic regression method was used to analyze the influencing factors of patients’ economic burden of disease,and Tobit regression method was used to analyze the influencing factors of patients’ health-related quality of life.Results:(1)In 2019,a total of 5.04 million RMB was reimbursed by 132 patients,with an average reimbursement of 38200 RMB per capita.Medical insurance reimbursement was the most,with a total of 3.92 million RMB,accounting for 77.68% of the total reimbursement expenses,and the per person was about 29700 RMB.The number of people with catastrophic expenses after medical insurance reimbursement was reduced to 86,and the proportion of patients paying out of pocket was reduced to 76.78 percent.After reimbursement,the total cost of disease economic burden decreased from 21.71 million RMB to 16.67 million RMB.The total cost per person was about 126300 RMB.The total cost of direct economic burden decreased from 17.87 million RMB to 12.83 million RMB,and the direct economic burden per person was about 97200 RMB.The total cost of indirect economic burden is 3.84 million RMB,and the per person indirect economic burden is about 2.91 million RMB.In addition,from the first medical treatment to the diagnosis,all patients lost 3.51 million RMB,and the per person loss is about 2.39 million RMB.(2)Economic burden of disease: patients who have failed to enter school,retired / dropped out of school,unemployment,early retirement,etc.,those who cannot leave assistive devices,those who have been to two or more hospitals,those who have visited more times,those who have been hospitalized for more than one month,and those who have received drug donation have heavier economic burden of disease.(3)Health related quality of life: from the current academic / employment situation,the health utility value of full-time / parttime patients is higher;from the insurance situation,the health utility value of patients with both medical insurance and endowment insurance is lower;from the disease name,the health utility value of patients with ALS is lower;from the total expenditure outside the hospital,the more the expenditure,the higher the health utility value;from the need for assistive devices To some extent,the patients who do not need AIDS have higher health utility values.Similarly,the patients who do not need care have higher health utility values.Conclusion:The study found that Shanghai has been concerned about rare and major diseases as early as the 1980 s and is gradually pushing forward and implementing relevant safeguard measures.However,the degree of guarantee for rare patients is limited and the role orientation is not clear,which leads to the low quality of life of rare patients,lack of security for medical care,compulsory education,employment and so on,and low social participation.The study suggests that Shanghai should build and improve the model of rare disease security system.The Shanghai government should identify its role and establish a government led,multi-party coordination and participation mechanism.Establish a multi-level medical security system for rare diseases to reduce the economic burden of patients.To promote the education,employment and other diversified security for patients with rare diseases in Shanghai,and improve the health-related quality of life of patients with rare diseases,so as to provide reference for the construction of China’s rare disease security system. |
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