Patterns of the Health and Economic Burden of 33 Rare Diseases in China: Nationwide Web-Based Study.

ABSTRACT:

Background

Rare diseases (RDs) affect millions of individuals collectively worldwide, contributing to significant burdens on patients and families in various aspects. However, there is a lack of evidence on the underlying patterns of burdens among diverse RDs for informing targeted social and health policies to address the unmet needs of this vulnerable population.

Objective

This study aimed to examine the underlying patterns of the health and economic burden of 33 different RDs in China and identify the potential determinants.

Methods

A nationwide internet-based cross-sectional survey was conducted in China between 2019 and 2020. Physical and mental health burden was measured by health-related quality of life. Economic burden was evaluated based on the proportions of

SUBMITTER: Yu J 

PROVIDER: S-EPMC11387910 | biostudies-literature | 2024 Aug

REPOSITORIES: biostudies-literature