Yuan Yuan, Wang Hao, Song Xiaomei, Tan Wei, Liu Yan, Liu Hongli, Hu Chaoqun, Guo Hong
Chongqing Medical University, Chongqing, China.
Department of Gastroenterology, Chongqing General Hospital, Chongqing University, Chongqing, China.
Front Public Health. 2025 May 29;13:1528778. doi: 10.3389/fpubh.2025.1528778. eCollection 2025.
Inflammatory bowel disease (IBD) is a chronic, non-specific inflammatory condition characterized by periods of relapse and remission, often requiring frequent medical visits. Family members, who are central to the patient's social support network, often serve as primary caregivers, facing significant physiological, psychological, and financial strain. However, research on caregiver burden in IBD is limited. This study aimed to assess the current state of caregiver burden in IBD and identify contributing factors, providing a valuable reference for evaluating caregiver burden and developing targeted interventions.
From February to December 2022, we conducted on-site questionnaire surveys with 236 IBD patients and their caregivers. The surveys collected general demographic information and utilized the Self-Rating Anxiety Scale (SAS), Self-Rating Depression Scale (SDS), Pittsburgh Sleep Quality Index (PSQI), and Caregiver Burden Inventory (CBI) to assess key variables. Basic information gathered from IBD patients and their caregivers included age, health status, education level, marital status, monthly family income, the presence of co-caregivers, and daily caregiving duration.
The study included 236 IBD patients and their caregivers. We found positive correlations between CBI scores and scores on the SAS, SDS, and PSQI ( = 0.180-0.709, < 0.01). Multiple linear regression analysis revealed that higher caregiver depression and anxiety levels, longer daily caregiving hours, younger patient age, lower patient educational level, and greater disease severity were significantly associated with increased caregiver burden. Female caregivers reported experiencing a greater burden than male caregivers.
Caregivers of IBD patients experience a substantial and multifaceted burden that is frequently underestimated. This excessive burden negatively impacts both patient outcomes and the caregiver's wellbeing, highlighting the critical need for comprehensive support from healthcare professionals and society to effectively address and alleviate caregiver burden.
炎症性肠病（IBD）是一种慢性非特异性炎症性疾病，其特征为病情反复复发和缓解，常需要频繁就医。家庭成员作为患者社会支持网络的核心，常担任主要照顾者，面临着巨大的生理、心理和经济压力。然而，关于IBD患者照顾者负担的研究有限。本研究旨在评估IBD患者照顾者负担的现状，并确定相关影响因素，为评估照顾者负担和制定针对性干预措施提供有价值的参考。
2022年2月至12月，我们对236例IBD患者及其照顾者进行了现场问卷调查。调查收集了一般人口统计学信息，并使用自评焦虑量表（SAS）、自评抑郁量表（SDS）、匹兹堡睡眠质量指数（PSQI）和照顾者负担量表（CBI）来评估关键变量。从IBD患者及其照顾者收集的基本信息包括年龄、健康状况、教育水平、婚姻状况、家庭月收入、是否有共同照顾者以及日常照顾时长。
本研究纳入了236例IBD患者及其照顾者。我们发现CBI得分与SAS、SDS和PSQI得分之间存在正相关（ = 0.180 - 0.709， < 0.01）。多元线性回归分析显示，照顾者更高的抑郁和焦虑水平、更长的日常照顾时长、患者更年轻的年龄、更低的患者教育水平以及更严重的疾病严重程度与照顾者负担增加显著相关。女性照顾者报告的负担比男性照顾者更重。
IBD患者的照顾者承受着巨大且多方面的负担，而这一负担常常被低估。这种过度负担对患者的治疗结果和照顾者的幸福感均产生负面影响，凸显了医疗专业人员和社会提供全面支持以有效应对和减轻照顾者负担的迫切需求。
