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

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 linear regression analysis were used to analyze the data analysis. RESULTS: Participating FCs had significantly lower scores in all eight SF‐36 domains compared with the general population in China (p < 0.01). FCs’ gender, education, daily care time, anxiety, and the perceived disease severity of patients were significant predictors of SF‐36 physical component summary scores. Caregiving help from others, anxiety, perceived disease severity, and medical insurance type were significant predictors of SF‐36 mental component summary scores. CONCLUSION: The findings showed FCs of patients with GD had lower HRQoL. There is an urgent need to address the health concerns of FCs of people with rare diseases including their HRQoL.