Primary caregiver burden and undiagnosed mental health illness in out-patients with inflammatory bowel disease—A multicentric prospective survey from the IBD Emerging Nations’ Consortium

Mental health is an overlooked aspect of inflammatory bowel disease (IBD) patient care with limited data from the developing world. The primary caregiver burden is expected to be high, but has not been evaluated. We conducted a questionnaire-based survey of consecutive out-patients with no diagnosed mental health illness (n = 289) and their primary caregivers (n = 247) from 10 centers across eight countries (Bangladesh, India, Iran, Malaysia, Myanmar, Nepal, Pakistan, Thailand) of IBD-Emerging Nations' Consortium (ENC). Patients were assessed for anxiety (PHQ-9), depression (GAD-7), quality of life (SIBDQ, IBDCOPE) and medication adherence (MMAS-8). Caregiver burden was assessed by Zarit-Burden Interview (ZBI), Ferrans and Power Quality of Life (QOL) scores and coping strategies (BRIEF-COPE). Multivariate logistic regression and correlation analyses were performed to identify risk factors and the impact on QOL in patients and caregivers. Moderate to severe depression and anxiety were noted in 33