CAREGIVER BURDEN AND SOCIOECONOMIC IMPACT OF HE AND OHE AMONG INDIVIDUALS CARING FOR PATIENTS WITH CIRRHOSIS
Author(s)
Arun B Jesudian, MD1, Debbie Goldschmidt, PhD2, Patrick Gagnon-Sanschagrin, MSc3, Aditi Shah, MSc4, Kana Yokoji, MSc3, Sharat Shankar, MSc4, Leonardo Passos Chaves, MD5, Olamide Olujohungbe, PharmD5, Annie Guerin, MSc3;
1Weill Cornell Medicine, New York, NY, USA, 2Analysis Group, New York, NY, USA, 3Analysis Group, Montreal, QC, Canada, 4Analysis Group, Toronto, ON, Canada, 5Bausch Health, Bridgewater, NJ, USA
1Weill Cornell Medicine, New York, NY, USA, 2Analysis Group, New York, NY, USA, 3Analysis Group, Montreal, QC, Canada, 4Analysis Group, Toronto, ON, Canada, 5Bausch Health, Bridgewater, NJ, USA
OBJECTIVES: Hepatic encephalopathy (HE) and its more severe form, overt HE (OHE), are serious complications of cirrhosis that impair daily functioning and often require caregiver support. This study aimed to characterize the burden on caregivers of patients with HE and OHE, including impacts on finances, work productivity, and quality of life (QoL).
METHODS: An online survey was conducted (September-November 2025) among US adults providing unpaid care to individuals with cirrhosis with or without HE, including a subgroup caring for patients with OHE. The survey collected characteristics of care recipients and caregivers, work productivity (WPAI), and caregiving burden (Zarit Burden Interview [ZBI]).
RESULTS: In total, 200 caregivers participated (100 non-HE; 100 HE, including 23 OHE). Median caregiver age was 60, 63, and 62 years in the non-HE, HE, and OHE cohorts, respectively; majority were female (54.0%, 67.0%, and 73.9%) and spouses of the care recipient (61.0%, 73.0%, and 78.3%). Caregiving intensity increased with disease severity, with caregivers providing an average of 3.8, 16.3, and 27.7 hours of care per week in the non-HE, HE, and OHE cohorts, respectively. Common tasks included monitoring health, accompanying patients to medical visits, and managing household activities. Employment among working-age caregivers decreased with disease severity (84.2%, 81.5%, and 61.1%), and among those employed, average work productivity loss over the past 7 days increased markedly (26.0%, 43.7%, and 60.5%). Financial difficulties were more frequently reported in the HE and OHE cohorts, including reduced ability to save money or pay bills on time. ZBI scores indicated progressively higher caregiver burden, with the highest burden among caregivers of patients with OHE.
CONCLUSIONS: HE and especially OHE are associated with substantially higher caregiving time, financial strain, work productivity loss, and QoL burden. Interventions that delay or prevent progression to OHE may meaningfully reduce caregiver strain and ease the societal burden of advanced cirrhosis.
METHODS: An online survey was conducted (September-November 2025) among US adults providing unpaid care to individuals with cirrhosis with or without HE, including a subgroup caring for patients with OHE. The survey collected characteristics of care recipients and caregivers, work productivity (WPAI), and caregiving burden (Zarit Burden Interview [ZBI]).
RESULTS: In total, 200 caregivers participated (100 non-HE; 100 HE, including 23 OHE). Median caregiver age was 60, 63, and 62 years in the non-HE, HE, and OHE cohorts, respectively; majority were female (54.0%, 67.0%, and 73.9%) and spouses of the care recipient (61.0%, 73.0%, and 78.3%). Caregiving intensity increased with disease severity, with caregivers providing an average of 3.8, 16.3, and 27.7 hours of care per week in the non-HE, HE, and OHE cohorts, respectively. Common tasks included monitoring health, accompanying patients to medical visits, and managing household activities. Employment among working-age caregivers decreased with disease severity (84.2%, 81.5%, and 61.1%), and among those employed, average work productivity loss over the past 7 days increased markedly (26.0%, 43.7%, and 60.5%). Financial difficulties were more frequently reported in the HE and OHE cohorts, including reduced ability to save money or pay bills on time. ZBI scores indicated progressively higher caregiver burden, with the highest burden among caregivers of patients with OHE.
CONCLUSIONS: HE and especially OHE are associated with substantially higher caregiving time, financial strain, work productivity loss, and QoL burden. Interventions that delay or prevent progression to OHE may meaningfully reduce caregiver strain and ease the societal burden of advanced cirrhosis.
Conference/Value in Health Info
2026-05, ISPOR 2026, Philadelphia, PA, USA
Value in Health, Volume 29, Issue S6
Code
EE229
Topic
Economic Evaluation
Topic Subcategory
Cost/Cost of Illness/Resource Use Studies, Work & Home Productivity - Indirect Costs
Disease
SDC: Gastrointestinal Disorders, SDC: Geriatrics, SDC: Neurological Disorders