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

Background 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. Methods 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. Results Moderate to severe depression and anxiety were noted in 33% (severe 3.5%) and 24% (severe 3.8%) patients, respectively. The risk factor for depression was active disease (p < 0.001, OR6.3), while male gender (p = 0.01, OR0.45) and medication adherence (p = 0.003, OR0.75) were protective. Risk factors for anxiety were unmarried status (p = 0.015, OR2.3), female gender (p = 0.004, OR0.41), steroid use (p = 0.016, OR2.1) and active disease (p < 0.001, OR7.97). High GAD-7 and PHQ-9 scores positively correlated with high disease activity (r = 0.55, p < 0.001, Crohn's disease; r = 0.52, p < 0.001 ulcerative colitis) and negatively with SIBDQ (r = - 0.63, p < 0.001; r = - 0.64, p < 0.001 CD; r = 0.36, p = 0.001,UC). Sixty-five per cent (159/249) primary caregivers reported high burden (ZBI >= 21), which positively correlated with low educational status and low-income and negatively with QOL(r = - 0.33, p < 0.001). The primary adaptive coping strategy among caregivers was religion, while maladaptive strategy was self-distraction. Conclusion Nearly two-thirds of primary caregivers reported high burden of care. There was also high prevalence of undiagnosed depression and anxiety in IBD out-patients. This highlights the need for patient-caregiver integrated mental-health services in the developing world.