Family caregivers of rare disease: A survey on health-related quality of life in family caregivers for Gaucher disease patients in China.

ABSTRACT:

Background

Rare diseases affect the health-related quality of life (HRQoL) of patients and their family caregivers (FCs). However, limited evidence is available on the HRQoL of FCs of patients with Gaucher disease (GD). This study aimed to assess HRQoL and related factors among FCs of patients with GD in China.

Methods

A cross-sectional online survey was conducted with 49 FCs recruited by convenience sampling. Participants completed the Medical Outcome Study Short Form-36 (SF-36), Zung's Self-Rating Anxiety Scale, Zung's Self-Rating Depression Scale, the Multi-dimensional Scale of Perceived Social Support, the Herth Hope Index, and a questionnaire about FCs' and patients' sociodemographic characteristics. Single-sample t tests, one-way analysis of variance, and multivariate

SUBMITTER: Xu J 

PROVIDER: S-EPMC8457695 | biostudies-literature | 2021 Sep

REPOSITORIES: biostudies-literature