Paulides Emma, Cornelissen Demi, de Vries Annemarie C, van der Woude C Janneke
Department of Gastroenterology and Hepatology, Erasmus Medical Center, Rotterdam, The Netherlands.
Department of Gastroenterology & Hepatology, University Medical Center Groningen, Groningen, The Netherlands.
Frontline Gastroenterol. 2021 Nov 26;13(5):402-408. doi: 10.1136/flgastro-2021-102027. eCollection 2022.
Inflammatory bowel disease (IBD) has a major impact on different aspects of life of patients with IBD, but functioning in the home environment is under-reported in literature. The aim of this study was to assess the impact of IBD on household and/or family life.
Adult patients with IBD from the outpatient clinic of the Erasmus MC (Rotterdam, the Netherlands) were invited to participate in this cross-sectional study between September and December 2020. A questionnaire was composed to measure the impact of IBD on functioning in the household and family life. In addition, the IBD Disability Index and Work Productivity and Activity Impairment Questionnaire were used. Data were analysed using descriptive statistics and multiple logistic regression modelling.
Of 308 invited patients, 229 patients were included (response rate 74%). Sixty-eight per cent of patients were diagnosed with Crohn's disease, 69% were female and median age was 38.0 years. Many patients reported difficulties with domestic activities (55.0%), leisure (53.9%), parenting (50.6%), sexual activities (48.4%) and interpersonal relationships (39.1%). Fatigue was associated with the experience of more severe difficulties in domestic activities (OR 16.160, 95% CI 6.053 to 43.141). Furthermore, 32.7% of patients felt that IBD influenced their desire to have children.
IBD has a markedly negative impact on household and/or family life in many patients. To optimise patient care, household and family related difficulties need to be considered in a holistic treatment approach.
炎症性肠病（IBD）对IBD患者生活的各个方面都有重大影响，但家庭环境中的功能状况在文献中报道较少。本研究的目的是评估IBD对家庭和/或家庭生活的影响。
邀请来自伊拉斯姆斯医学中心（荷兰鹿特丹）门诊的成年IBD患者参加2020年9月至12月的这项横断面研究。编制了一份问卷来衡量IBD对家庭和家庭生活功能的影响。此外，还使用了IBD残疾指数和工作效率与活动障碍问卷。数据采用描述性统计和多元逻辑回归模型进行分析。
在308名受邀患者中，229名患者被纳入研究（应答率74%）。68%的患者被诊断为克罗恩病，69%为女性，中位年龄为38.0岁。许多患者报告在家庭活动（55.0%）、休闲活动（53.9%）、育儿（50.6%）、性活动（48.4%）和人际关系（39.1%）方面存在困难。疲劳与家庭活动中更严重的困难体验相关（比值比16.160，95%置信区间6.053至43.141）。此外，32.7%的患者认为IBD影响了他们要孩子的意愿。
IBD对许多患者的家庭和/或家庭生活有明显的负面影响。为了优化患者护理，在整体治疗方法中需要考虑与家庭和家庭相关的困难。
