Abstract

Background: Inflammatory Bowel Diseases (IBD) such as Crohn's disease (CD) and ulcerative colitis (UC) are known to alternate episodes of active disease with frequent symptoms with periods of remission. This significantly impacts everyday life of the IBD patient but it does not stop there. Caregivers of IBD patients, usually spouses, partners or friends, assist them with medical responsibilities and daily activities. In this study, we target to assess the impact associated with caregiving for an IBD patient to provide decision support for potential interventions. Methods: IBD patients of the UCLA Center for Inflammatory Bowel Diseases and their self-identified caregivers were approached through email, in the outpatient clinic and the Medical Procedures Unit (MPU) to fill out online questionnaires; the Work Productivity and Activity Impairment questionnaire (WPAI), the short Inflammatory Bowel Disease Questionnaire (sIBDQ) for QoL and the Mobile Health Index (mHI) for disease activity. The caregivers filled out the Zarit Burden Interview (ZBI) and a caregiver version of the WPAI. Both IBD patients and their caregivers provided information about their medical history and demographics. The results were assessed for caregiver burden and potential predictors of this burden. Results: 143 IBD patients (42.8±15.3 years, 55.2% females, 74.1% employed, 48.9% CD) and 65 caregivers (47.3±15.4 years, 46.2% females, 69.3% wife/husband of patient, 69.2% employed) were included in the study. The mHI showed that 73.7% of the IBD patients were in remission. Also, 12.3% of the caregivers suffer from a chronic disease themselves. An average of 9±22 hours were spent on caregiving per week. Due to caregiving, 27.3% of the employed caregivers had missed (4±8 hours) work and 51.1% had experienced decreased productivity at work Additionally, 40% of caregivers experienced mild to moderate burden and 36% felt stressed because of caregiving. Also, the ZBI showed that 46.9% of caregivers felt they could do a better job in caregiving. The odds of caregiver burden were increased for IBD patients with active disease (OR 13.1; 95% CI: 2.75–63.07) compared to remissive IBD patients. Conclusions: When looking at the impact of IBD on the caregivers of patients, our results show, that even when IBD patients are in remission, there is still significant impact. Caregivers are stressed about the future and their productivity is affected. Although this problem tends to be regularly unnoticed by physicians, interventions could possibly be tremendously valuable in providing support to caregivers of IBD patients.

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