title: The multi-dimensional burden of cirrhosis and hepatic encephalopathy on patients and caregivers.
abstract: OBJECTIVE
  Cirrhosis and hepatic encephalopathy (HE) can adversely affect survival, but their effect on socioeconomic and emotional burden on the family is not clear. The aim was to study the emotional and socioeconomic burden of cirrhosis and HE on patients and informal caregivers.
  
  
  METHODS
  A cross-sectional study in two transplant centers (Veterans and University) of cirrhotic patients and their informal caregivers was performed. Demographics for patient/caregivers, model-for-end-stage liver disease (MELD) score, and cirrhosis complications were recorded. Patients underwent a cognitive battery, sociodemographic, and financial questionnaires. Caregivers were given the perceived caregiver burden (PCB; maximum=155) and Zarit Burden Interview (ZBI)-Short Form (maximum=48) and questionnaires for depression, anxiety, and social support.
  
  
  RESULTS
  A total of 104 cirrhotics (70% men, 44% previous HE, median MELD 12, 49% veterans) and their caregivers (66% women, 77% married, relationship duration 32±14 years) were included. Cirrhosis severely impacted the family unit with respect to work (only 56% employed), finances, and adherence. Those with previous HE had worse unemployment (87.5 vs. 19%, P=0.0001) and financial status (85 vs. 61%, P=0.019) and posed a higher caregiver burden; PCB (75 vs. 65, P=0.019) and ZBI (16 vs. 11, P=0.015) compared with others. Cognitive performance and MELD score were significantly correlated with employment and caregiver burden. Veterans and non-veterans were equally affected. On regression, depression score, MELD, and cognitive tests predicted both PCB and ZBI score.
  
  
  CONCLUSIONS
  Previous HE and cognitive dysfunction are associated with worse employment, financial status, and caregiver burden. Cirrhosis-related expenses impact the family unit's daily functioning and medical adherence. A multidisciplinary approach to address this burden is required.
authors.affiliation: Division of Gastroenterology, Hepatology, and Nutrition, Virginia Commonwealth University, McGuire VA Medical Center, Richmond, Virginia 23249, USA. jsbajaj@vcu.edu
authors.forename: Jasmohan S
authors.initials: JS
authors.lastname: Bajaj
authors.forename: James B
authors.initials: JB
authors.lastname: Wade
authors.forename: Douglas P
authors.initials: DP
authors.lastname: Gibson
authors.forename: Douglas M
authors.initials: DM
authors.lastname: Heuman
authors.forename: Leroy R
authors.initials: LR
authors.lastname: Thacker
authors.forename: Richard K
authors.initials: RK
authors.lastname: Sterling
authors.forename: R Todd
authors.initials: RT
authors.lastname: Stravitz
authors.forename: Velimir
authors.initials: V
authors.lastname: Luketic
authors.forename: Michael
authors.initials: M
authors.lastname: Fuchs
authors.forename: Melanie B
authors.initials: MB
authors.lastname: White
authors.forename: Debulon E
authors.initials: DE
authors.lastname: Bell
authors.forename: HoChong
authors.initials: H
authors.lastname: Gilles
authors.forename: Katherine
authors.initials: K
authors.lastname: Morton
authors.forename: Nicole
authors.initials: N
authors.lastname: Noble
authors.forename: Puneet
authors.initials: P
authors.lastname: Puri
authors.forename: Arun J
authors.initials: AJ
authors.lastname: Sanyal
mesh_terms: D000328:Adult; D000368:Aged; D001007:Anxiety / Q000523:psychology; D017028:Caregivers / Q000191:economics / Q000523:psychology*; D003072:Cognition Disorders / Q000191:economics / Q000523:psychology*; D017281:Cost of Illness; D003430:Cross-Sectional Studies; D003863:Depression / Q000523:psychology; D004651:Employment / Q000191:economics / Q000523:psychology; D005260:Female; D006501:Hepatic Encephalopathy / Q000150:complications / Q000191:economics / Q000523:psychology*; D006801:Humans; D008103:Liver Cirrhosis / Q000150:complications / Q000191:economics / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D010349:Patient Compliance / Q000523:psychology; D011788:Quality of Life / Q000523:psychology; D012044:Regression Analysis; D011795:Surveys and Questionnaires; D014728:Veterans / Q000523:psychology