Determinants and Equity Evaluation for Health Expenditure Among Patients with Rare Diseases in China

Abstract

Background:China has not established social security system for rare diseases. Rare diseases could easily impoverish patients and their families. Little research has studied the equity and accessibility of health services for patients with rare diseases in China. This study aimed to explore the factors that influence health expenditure of rare diseases and evaluate its equity.Methods:Questionnaire survey about living conditions and cost burden of patients with rare diseases was conducted. Individual and family information, health expenditure and reimbursement in 2014 of 982 patients were collected. The impact of medical insurance, individual sociodemographic characteristics, family characteristics, and healthcare need on total and out-of-pocket (OOP) health expenditures was analyzed through the generalized linear model. Equity of health expenditure was evaluated by both concentration index and Lorenz curve.Results:Of all the surveyed patients, 11.41% had no medical insurance and 92.10% spent money to seek medical treatment in 2014. It was suggested female (P = 0.048), over 50 years of age (P = 0.062), high-income group (P = 0.021), hospitalization (P = 0.000), and reimbursement ratio (RR) (P = 0.000) were positively correlated with total health expenditure. Diseases not needing long-term treatment (P = 0.000) was negatively correlated with total health expenditure. Over 50 years of age (P = 0.065), high-income group (P = 0.018), hospitalization (P = 0.000) and having Urban Employee Basic Medical Insurance (UEBMI) (P = 0.022) were positively correlated with OOP health expenditure. Patient or the head of the household having received higher education (P = 0.044 and P = 0.081) and reimbursement ratio (P = 0.078) were negatively correlated with OOP health expenditure. The equity evaluation found concentration indexes of health expenditure before and after reimbursement were 0.0550 and 0.0539, respectively.Conclusions:OOP health expenditure of patients with UEBMI was significantly more than that of patients without medical insurance. However, for any other medical insurance, there was no difference between OOP health expenditure of the insured patients and patients without insurance. The current reimbursement policies have increased the equity of health expenditure, but are biased toward high-income people.

A Systematic Review of Equity in Healthcare Financing in Low- and Middle-Income Countries

“…diseases face higher costs than others. 16 Also the issue of equity in financing healthcare systems is important in LMICs. Nevertheless, a limited number of Asian countries, including Thailand and Malaysia, have been successful in establishing equity within their systems.…”

Out-of-pocket expenses for myasthenia gravis patients in China: a study on patients insured by basic medical insurance in China, 2013–2015

“…The effect of age on OOP expenses has been addressed in other studies [34], but this study found that the effect was more pronounced for inpatients with MG. This could be related to the fact that different types of BMI cover the population according to different ages and that they have different reimbursement policies for hospitalization expenses.…”

The economic and health impact of rare diseases: A meta-analysis

“…Studies often identified study participants (adult and children) from patients receiving outpatient care or through disease centres, patients' associations (19,34,39,43) and national registries (16). Self-administered surveys were used by the BURQOL-RD project, as well as two out of three studies conducted in China (14,28). Of the many studies administering questionnaires, some relied solely on web-based surveys (8,19,27), questionnaires sent by mail (26,29,35), the combination of the two (16,17,(20)(21)(22)(23)25,(29)(30)(31)34,35,45,46) or face to face (28,43) administration.…”

“…Rare diseases in general were examined in five cases (14,(33)(34)(35)(36) with three studies focusing on more than one rare disease (15,16,27). Further, three studies included or focused on Duchenne Muscular Dystrophy (15)(16)(17), two on Haemophilia (18,19,47,47) and two on Juvenile Idiopathic Arthritis (20,25) with several other rare diseases addressed just once in the remaining studies.…”