Socio-economic costs of rare diseases and the risk of financial hardship: a cross-sectional study.

ABSTRACT:

Background

To achieve universal healthcare coverage (UHC), the rare disease (RD) population must also receive quality healthcare without financial hardship. This study evaluates the impact of RDs in Hong Kong (HK) by estimating cost from a societal perspective and investigating related risk of financial hardship.

Methods

A total of 284 RD patients and caregivers covering 106 RDs were recruited through HK's largest RD patient group, Rare Disease Hong Kong, in 2020. Resource use data were collected using the Client Service Receipt Inventory for Rare disease population (CSRI-Ra). Costs were estimated using a prevalence-based, bottom-up approach. Risk of financial hardship was estimated using catastrophic health expenditure (CHE) and impoverishing health expenditure (IHE) indica

SUBMITTER: Chung CCY 

PROVIDER: S-EPMC10240356 | biostudies-literature | 2023 May

REPOSITORIES: biostudies-literature