Caregiver burden and related determinants of adult patients with β- thalassemia major in mainland China

Abstract

Purpose The caregivers of adult patients with β-thalassemia major bear not only physical but also emotional and economic pressures of providing care. The aim of this study was to examine the determinants of caregiver burden in adult patients with β-thalassemia major in mainland China. 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-thalassemia major and their caregivers. Caregiver burden was assessed using the Zarit Burden Interview (ZBI). Data on patient demographics, disease and therapy characteristics, and caregivers’ demographic characteristics were collected and analyzed using independent t-tests, analysis of variance, 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 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 caregivers required to care of others were positively associated with caregiver burden (p<0.05). Married caregivers were negatively associated with caregiver burden (p<0.05). Conclusions The caregivers of adult patients with β-thalassemia major in mainland China experienced a moderate-to-severe level of caregiving burden. The burden was higher in patients with a history of interrupted blood transfusion therapy or in caregivers caring for others. Additionally, married caregivers experienced lower burdens compared to non-married caregivers. These findings provide a reference to identify caregivers with higher burdens among patients with β-thalassemia major.