A cross-sectional study: caregiver burden and related determinants of adult patients with β-thalassemia major in mainland China

Abstract Background The informal caregivers of adult patients with β-thalassemia major (β-TM) bear not only physical but also emotional and economic pressures of providing care. This study is the first to evaluate the caregiver burden by Zarit Burden Interview (ZBI) of adult patients with β-TM in mainland China and to identify predictors of caregiver burden. Methods In this cross-sectional study, we conducted an online survey with snowball sampling covering seven provinces between September 1, 2021, and January 31, 2022, of patients aged ≥ 18 years with β-TM and their informal caregivers. Caregiver burden was assessed using the ZBI. Data on patient demographics, disease and therapy characteristics, and informal caregivers’ demographic characteristics were collected and analysed using independent t-tests, analysis of variance, Spearman’s correlation and multiple linear regression. Results Of 75 included patients, more than half (50.7%) were male. The mean patient age was 24.69 ± 5.59 years. The mean age of the informal caregivers was 50.60 ± 9.16 years, with women (74.7%) being predominant. The ZBI score was 38.00 ± 17.02. Multiple linear regression analysis showed that patients with interrupted blood transfusion therapy and informal caregivers required to care of others were positively associated with caregiver burden (p