Burden of caregiving of alcohol related liver disease patients: a possible role of training and caregiver groups frequency. Proposal of a method, preliminary results.

Background: The patient with alcohol related liver disease (ALD) is an extremely complex patient who can be affected by various problems: alcohol use disorders (AUDs) (intoxication or withdrawal syndrome), psychopathological manifestations, hepatic encephalopathy (HE), family and social discomfort. Burden of caregiving for this type of patient is particularly severe. For this reason we propose our own working model.

Methods: Thirty-one informal caregivers (ICs) of patients with ALD (28 females; mean age: 51±11) recruited in the period September-November 2021 followed prospectively were evaluated retrospectively. Those who completed all the steps (initial information/ training meeting), participation in support groups for caregivers and participation in self-help groups for AUD (club of alcoholics in treatment, anonymous family members, other realities) were selected (31/71: 43%). ICs underwent Zarit Burden Interview and a semi-structured interview.

Results: From the semi-structured interview, emotional, organizational, but also constructive reflections emerge. Zarit Score (ZS) was found to be light or nil in the 13% (4/31), moderate in the 22.5% (7/31), severe in the 32% (10/31) and very serious in the 32% (10/31). The parameters that most influenced initial ZS are the presence of HE and primitive psychiatric comorbidity (PC). By dividing the caregivers into two groups (40) odds ratio is 2.4231 (95% CI: 0.4059-14.4637) in the presence of HE and odds ratio is 5.3846 (95% CI: 0.5666 to 51.1738) in the presence of PC. After the frequency to the caregiver groups (CGs) (at least 4) the ZS is significantly decreased (49.9±18 vs. 34±11; t=4.1966; P<0.0001) and this regardless of the presence of HE, PC or active alcohol consumption.

Conclusions: While waiting to increase the number of cases and to submit it to a more in-depth verification, we suggest to other health organizations to use and verify this organizational/ relational method for primary ICs, in an attempt to optimize the health and social health activity in a complex medical sector (ALD) in constant growth.