Economic burden and health related quality of life of ultra-rare Gaucher disease in China.

ABSTRACT:

Background

The diagnosis and health care of patients with rare diseases present a tremendous challenge worldwide. This study described the health care service utilization through participants' perspective and estimated the cost of illness (COI), and patients with Gaucher disease (GD)'s/caregivers' health-related quality of life in China.

Method

An online retrospective survey of patients with GD and their caregivers was conducted during May-June 2018. Socio-demographic, health service utilization, disease-related expenses, social support, sleep quality (Pittsburgh Sleep Quality Index [PSQI]), and the Short Form Health Survey (SF-36) were investigated. Using self-reported information, we estimated the annual COI, including direct healthcare, direct non-healthcare, and indirect

SUBMITTER: Qi X 

PROVIDER: S-EPMC8356434 | biostudies-literature | 2021 Aug

REPOSITORIES: biostudies-literature