关键词: 医疗服务利用, 经济负担, 健康状况, 罕见病

Abstract:

Many patients with rare diseases not only suffer from more severe conditions but often receive less disease management,which is one significant public health concern globally. Few practice-based surveys focus on the care of patients with rare diseases. In the present study, we aimed to investigate medical service utilization, economic burden and health status of patients with rare diseases in China. A cross-sectional questionnaire survey focusing on patients with rare diseases was conducted. Descriptive analysis was conducted to examine the sociodemographic characteristics, medical service utilization, economic burden and health status. Logistic regression analysis was applied to explore influencing factors of self-rated health. A total of 982 patients with 81 types of diseases were included in this survey. We found that 58.2% of patients experienced misdiagnosis, and 35.2% of the patients were misdiagnosed for at least five times. Moreover, 65.8% of patients traveled to hospitals to seek medical services, and 92.1% of patients paid expenses for their treatment. However, only 1.3% of patients could afford their medical expenditure without debts, and 86.8% of patients regarded their health status as bad or moderate. Significant factors correlated with health status were economic status, gender, age, employment and household size. From this study, the accessibility of medical service utilization, the affordability of medical economic burden, and the condition of health status for patients with rare disease in China were considerably poor. Basic medical insurance did not play its role in improving the utilization of medical services and the affordability of medical costs. Social support should be encouraged to improve patients’ health status.

Key words: Medical service utilization, Economic burden, Health status, Rare diseases