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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 < 0.05). Age of informal caregivers were borderline significant positively associated with caregiver burden (p < 0.1). Married informal caregivers were negatively associated with caregiver burden (p < 0.05).
CONCLUSIONS: The informal caregivers of adult patients with β-TM in mainland China experienced a moderate-to-severe level of caregiving burden. The caregiver burden was higher in patients with a history of interrupted blood transfusion therapy or in informal caregivers who were older or needed to care for others. Additionally, married informal caregivers experienced lower burdens compared to non-married informal caregivers. These findings provide a reference to identify informal caregivers with higher burdens among patients with β-TM.
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 < 0.05). Age of informal caregivers were borderline significant positively associated with caregiver burden (p < 0.1). Married informal caregivers were negatively associated with caregiver burden (p < 0.05).
CONCLUSIONS: The informal caregivers of adult patients with β-TM in mainland China experienced a moderate-to-severe level of caregiving burden. The caregiver burden was higher in patients with a history of interrupted blood transfusion therapy or in informal caregivers who were older or needed to care for others. Additionally, married informal caregivers experienced lower burdens compared to non-married informal caregivers. These findings provide a reference to identify informal caregivers with higher burdens among patients with β-TM.
摘要：
背景：成人β-地中海贫血（β-TM）患者的非正式照顾者不仅承受着提供护理的身体压力，而且还承受着情感和经济压力。本研究首次通过Zarit负担访谈（ZBI）对中国大陆成年β-TM患者的照顾者负担进行评估，并确定照顾者负担的预测因素。
方法：在这项横断面研究中，我们在2021年9月1日至2022年1月31日期间对7个省份进行了滚雪球抽样的在线调查,调查了年龄≥18岁的β-TM患者及其非正式护理人员.使用ZBI评估看护者负担。患者人口统计数据，疾病和治疗特点，和非正式护理人员的人口统计学特征进行了收集和分析，使用独立的t检验，方差分析，斯皮尔曼相关和多元线性回归。
结果：在纳入的75名患者中，超过一半(50.7%)为男性。患者平均年龄为24.69±5.59岁。非正式护理人员的平均年龄为50.60±9.16岁，女性（74.7%）占主导地位。ZBI评分为38.00±17.02。多元线性回归分析显示，中断输血治疗和非正式照顾者需要照顾他人的患者与照顾者负担呈正相关（p<0.05）。非正式照顾者的年龄与照顾者负担呈显著正相关(p<0.1)。已婚非正式照顾者与照顾者负担呈负相关(p<0.05)。
结论：中国大陆成年β-TM患者的非正式照顾者经历了中度至重度的照顾负担。有中断输血治疗史的患者或年龄较大或需要照顾他人的非正式照顾者的照顾者负担较高。此外,与未婚非正式照顾者相比，已婚非正式照顾者的负担较低。这些发现为确定β-TM患者中负担较高的非正式护理人员提供了参考。
方法：在这项横断面研究中，我们在2021年9月1日至2022年1月31日期间对7个省份进行了滚雪球抽样的在线调查,调查了年龄≥18岁的β-TM患者及其非正式护理人员.使用ZBI评估看护者负担。患者人口统计数据，疾病和治疗特点，和非正式护理人员的人口统计学特征进行了收集和分析，使用独立的t检验，方差分析，斯皮尔曼相关和多元线性回归。
结果：在纳入的75名患者中，超过一半(50.7%)为男性。患者平均年龄为24.69±5.59岁。非正式护理人员的平均年龄为50.60±9.16岁，女性（74.7%）占主导地位。ZBI评分为38.00±17.02。多元线性回归分析显示，中断输血治疗和非正式照顾者需要照顾他人的患者与照顾者负担呈正相关（p<0.05）。非正式照顾者的年龄与照顾者负担呈显著正相关(p<0.1)。已婚非正式照顾者与照顾者负担呈负相关(p<0.05)。
结论：中国大陆成年β-TM患者的非正式照顾者经历了中度至重度的照顾负担。有中断输血治疗史的患者或年龄较大或需要照顾他人的非正式照顾者的照顾者负担较高。此外,与未婚非正式照顾者相比，已婚非正式照顾者的负担较低。这些发现为确定β-TM患者中负担较高的非正式护理人员提供了参考。
