Economic Burden Of Amyotrophic Lateral Sclerosis (als) Patients In Southwest China And Its Related Factors

Objective: To investigate the economic burden of ALS patients in southwest China and its related influencing factors,in order to understand the current economic burden of ALS patients and their quality of life in southwest China,so as to provide theoretical basis for reducing the economic burden of ALS patients and further improving the quality of life of ALS patients.Methods: A total of 50 patients with ALS who were admitted to the outpatient and inpatient departments of sichuan provincial people's hospital from 2017.1 to 20119.6 and were diagnosed as probable or definite ALS according to the diagnostic criteria were collected.Economic burden questionnaire,amyotrophic lateral sclerosis functional rating scale and he MOS item short from health survey were used to evaluate the economic burden,severity of the disease and quality of life of the patients.We analyzed whether there were significant differences in the clinical characteristics,quality of life and economic burden of ALS patients under different conditions by using independent sample T test,mann-whitney U test or analysis of variance.The patients were divided into two groups: the group with medical insurance and the group without medical insurance.We compared the financial burden,severity of illness and quality of life of the two groups.At the same time,we used correlation analysis and multiple linear regression to analyze the factors affecting patients' economic burden and quality of life.Result: Among the 50 ALS patients included in this study,31 were males and 19 were females.The patient was 15-75(53.18±12.99)years old and the course of disease was 0.42-7.4(2.31±1.65)years.42%(21)of the patients had a primary school education or below,42% had a secondary school education(middle school and high school),and 7 had a university education or above.The mean score of ALS-FRS was 23.3±9.33 points,the mean score of ball part was 12.18±3.60 points,the mean score of function of both upper limbs was 3.62±2.77 points,the mean score of function of both lower limbs was 3.66±2.41 points,and the mean score of other functions was 3.84±2.74 points.Of the 50 patients,4 had bulb disease and 46 had limb disease.58%(29)of the patients were unemployed due to illness,and 42%(21)of the patients did not affect their work.We found that there were no statistical differences in age,disease course,care time,asl-frs,upper limb function,lower limb function and other function scores of the patients in terms of gender and location of onset(p >0.05).The average score of sf-36 in the included ALS patients was 82.8±22.3 points,including 40.94±10.4 points for physical health and 37.3±13.86 points for mental health.Sf-36 scores were lower in ALS patients whose family members affected work,who used mobile devices,and who used ventilators(p >0.05).There was no significant statistical difference in sf-36 score in gender,education background,age,influence on personal work,use of riluzole,personal care,gastroenterostomy,rehabilitation treatment,and medical insurance(p >0.05).In this survey,the average per capita annual income was 41700± 84,800 yuan,the average per capita annual income was 79400±134,000 yuan,the total per capita expenses were 85400± 72,400 yuan,including 26800± 32,400 yuan of indirect expenses,58000± 60,200 yuan of direct expenses,51900 ± 57,100 yuan of direct medical expenses,6800± 13,700 yuan of direct non-medical expenses,and 44300± 48,400 yuan of out-of-pocket expenses.None of the 50 patients received gastric tube placement or psychological treatment,and only 3 patients received non-invasive ventilator assisted ventilation,1 patient underwent gastrostomy or 1 patient underwent home modification.There was no significant statistical difference in the costs of ALS patients of different genders and the location of onset(p >0.05).Patients with ALS who used riluzol,whose work was affected by illness,who used mobile devices,who used ventilator,and who underwent rehabilitation treatment had higher costs(p >0.05),while there was no significant difference in the costs of family members affected by illness,who asked for care,gastrostomy,and the group with medical insurance compared with the comparison group(p >0.05).There was no significant difference between the medical insurance group and the non-medical insurance group(p >0.05).We found that the total costs of ALS patients were positively correlated with annual personal income,family income,care time,indirect costs and self-financing costs(p >0.05),and negatively correlated with als-frs score and sf-36 score(p >0.05).Sf-36 was negatively correlated with total and indirect costs,but positively correlated with FRS score(p >0.05),and was not significantly correlated with age,disease course,annual medical expenses,direct expenses,direct medical expenses,and out-of-pocket expenses(p >0.05).Conclution: The financial burden of ALS patients in southwest China is large,and affected by personal and family income,the higher the out-of-pocket expenses of patients,the higher the financial burden will be.With the increase of the care time of ALS patients,the worse the functional score of the patients,the more severe the disease,the greater the economic burden of the patients,and the worse the quality of life.This study also reflects that the prevalence of gastrostomy and non-invasive ventilator in ALS patients in southwest China is low,and the financial burden of ALS patients can only be alleviated by medical insurance.There is an urgent need for national policies to provide more support to ALS patients so as to reduce their financial burden and improve their quality of life.