A Preliminary Exploratory Analysis of Quality of Life, Caregiver Burden, and Disease Management Awareness among Caregivers of Patients with Hepatic Encephalopathy

Background: Chronic liver disease (CLD) is a major public health concern, with hepatic encephalopathy (HE) manifesting in a wide spectrum of cirrhotic patients, affecting approximately 20-80% of cases.The prevalence further increases among those with decompensated liver disease.The resulting neuropsychiatric impairment and compromised self-care abilities in these patients impose a considerable caregiving burden on family members, significantly affecting their quality of life (QOL).Materials and methods: This paper reports preliminary exploratory findings of a larger cross-sectional descriptive study, conducted among 117 caregivers of patients with HE at a tertiary hepatology hospital to assess QOL, caregiver burden, and disease management awareness.Results: One-fourth of patients were in grade IV HE.Most caregivers were female (59.8%), married (75.2%), and spent 6-9 hours daily on caregiving.Spouses formed the largest group (43.6%), with 41% caring for grade IV HE patients.Over half (54.7%) experienced mild to moderate burden, while 20.5% reported moderate to severe burden.The majority (91.5%) showed good disease management awareness.Significant differences in QOL as per the physical and mental components of the SF-36 questionnaire were noted across relationships with patient, income, personal illness, and disease duration.The number of dependents correlated significantly with burden, while income, socioeconomic status, and wage loss were determined to be the key predictors.Conclusion: Caregivers of patients with HE experience considerable physical, emotional, and socioeconomic burden despite good disease management awareness.Lower income, poorer socioeconomic status, and wage loss significantly contribute to higher caregiver burden, underscoring the need for structured support and counseling interventions to enhance caregiver well-being and QOL.