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
Issued Date
2024-01-01
Resource Type
ISSN
02548860
eISSN
09750711
Scopus ID
2-s2.0-85198919137
Journal Title
Indian Journal of Gastroenterology
Rights Holder(s)
SCOPUS
Bibliographic Citation
Indian Journal of Gastroenterology (2024)
Suggested Citation
Banerjee R., Pal P., Hilmi I., Raghunathan N., Rahman M., Limsrivillai J., Kamani L., Ghoshal U.C., Aye T.T., Joshi N., Alavinejad P., Peddi K., Patel R., Godbole S., Reddy D.N. 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. Indian Journal of Gastroenterology (2024). doi:10.1007/s12664-024-01617-y Retrieved from: https://repository.li.mahidol.ac.th/handle/20.500.14594/100017
Title
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
Author's Affiliation
Yangon General Hospital
Ahvaz Jundishapur University of Medical Sciences
Asian Institute of Gastroenterology India
University of Malaya Medical Centre
Mahidol University
Apollo Multispeciality Hospitals
Sheikh Russel National Gastroliver Institute and Hospital
Nidan Hospital
National Medical Centre
Yashoda Hospitals
Ahvaz Jundishapur University of Medical Sciences
Asian Institute of Gastroenterology India
University of Malaya Medical Centre
Mahidol University
Apollo Multispeciality Hospitals
Sheikh Russel National Gastroliver Institute and Hospital
Nidan Hospital
National Medical Centre
Yashoda Hospitals
Corresponding Author(s)
Other Contributor(s)
Abstract
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. Graphical Abstract: (Figure presented.)