Introduction
Stigmatization in liver diseases is driven by misconceptions and the perception that patients are responsible for their condition, negatively affecting their quality of life.
Aims & Methods
This study aimed to investigate patients’ perception of stigma in chronic liver disease (CLD) according to disease aetiology.
We conducted a prospective study including adult patients (≥18 years) with different aetiologies of chronic liver disease: alcohol-related liver disease (ALD), metabolic dysfunction–associated and alcohol-related liver disease (MetALD), metabolic dysfunction–associated steatotic liver disease (MASLD), hepatitis B virus (HBV), hepatitis C virus (HCV), autoimmune hepatitis (AIH), primary biliary cholangitis (PBC), and primary sclerosing cholangitis (PSC)—followed in a hepatology outpatient clinic. Perceived stigma was assessed using the Hepatic Stigma Questionnaire (HSQ), an 18-item instrument evaluating four domains: stereotypes, discrimination, shame, and social isolation. Perceived stigma was defined as responding “agree” or “strongly agree” to at least one HSQ item. The questionnaire was completed at home by the patients and subsequently returned anonymously to the outpatient clinic. Demographic and clinical data were also collected.
Results
A total of 501 patients were invited to complete the questionnaire; 301 were included, corresponding to a response rate of 58.33%. Of these, 63.5% were male (n = 191), with a mean age of 64.7 ± 11.6 years. Aetiology of CLD distribution was MASLD (28.5%), followed HBV (18.3%), HCV (15.3%), MetALD (13.6%), ALD (11.6%), PBC (9.0%), AIH (3.0%), and PSC (0.7%). Overall, 53.3% of patients reported perceived stigma in at least one domain. When stratified by aetiology, perceived stigma was highest in ALD (82.4%) and MetALD (71.8%), followed by viral hepatitis (HBV 59.3%, HCV 48.9%), and lower in autoimmune liver diseases (AIH, PBC, and PSC combined: 44.4%). Patients with HBV had significantly higher perceived stigma scores in the stereotype (p < 0.05) and shame (p < 0.05).
Conclusion
In this study, the perceived stigma is highly prevalent in chronic liver disease, affecting more than half of patients, and varied significantly by aetiology. Alcohol-related liver disease carried the highest stigma burden. These findings highlight the need for targeted strategies to reduce stigma in chronic liver disease.
References
Carol M, Pérez-Guasch M, Solà E, Cervera M, Martínez S, Juanola A, Ma AT, Avitabile E, Napoleone L, Pose E, Graupera I, Honrubia M, Korenjak M, Torres F, Ginès P, Fabrellas N; LiverHope Consortium Investigators. Stigmatization is common in patients with non-alcoholic fatty liver disease and correlates with quality of life. PLoS One. 2022 Apr 6;17(4):e0265153. doi: 10.1371/journal.pone.0265153. PMID: 35385510; PMCID: PMC8986095.
Vaughn-Sandler V, Sherman C, Aronsohn A, Volk ML. Consequences of perceived stigma among patients with cirrhosis. Dig Dis Sci. 2014 Mar;59(3):681-6. doi: 10.1007/s10620-013-2942-0. Epub 2013 Nov 19. PMID: 24248421; PMCID: PMC3944010.
