Abstract
BACKGROUND: While previous studies have evaluated caregivers' quality of life (QOL), burnout, and stress amongst across a variety of chronic illnesses, few such studies have been related to inflammatory bowel disease (IBD). METHODS: Caregivers accompanying adult patients with IBD at 6 tertiary centers were enrolled. They completed self-administered surveys related to QOL and burden, including the QOL scale, Zarit Burden Interview (ZBI), and Brief COPE. RESULTS: Of the 200 consecutive caregivers asked to participate, 162 (81.0%) enrolled and completed the survey. A total of 43.8% caregivers reported having a high level of burden as measured by the ZBI. Factors predictive of a high burden included female gender, younger age of caregiver, household income <$30,000, having more than one dependent in the household, caring for a patient with active disease and higher disease severity, and a personal history of psychiatric illness. Over one third of the caregivers reported a maladaptive coping pattern. The caregiver factors predictive of maladaptive coping skills included male gender, lack of involvement in a support group, a personal history of psychiatric illness, and living in a different household from the patient. CONCLUSIONS: A large proportion of caregivers of IBD patients experience a high level of caregiver burden and reduced QOL. Participation in religious/spiritual activities and support groups appeared to reduce perceived caregiver burden and improve QOL. This study suggests there is an unmet need to address the caregiver burden of adult IBD patients.