CHRONIC liver disease stigma may now be measured more systematically after researchers developed and validated the Liver Disease Stigma Scale (LDSS), the first psychometric tool designed specifically to assess stigma in adults with chronic liver disease.1
The study involved 211 patients attending hepatology services at a tertiary centre, and found that people with alcohol-associated liver disease (ALD) reported markedly higher levels of stigma than those with non-ALD liver disease. The differences were most pronounced for internalised stigma and stigma experienced from family members.1
Liver Disease Stigma Linked to Poorer Care Engagement
Chronic liver disease (CLD) and cirrhosis are increasing globally, driven largely by ALD and metabolic dysfunction-associated steatotic liver disease (MASLD). These conditions have overtaken viral hepatitis as the leading causes of liver-related mortality in the USA.1
Alongside the physical burden of disease, stigma has emerged as a significant barrier to diagnosis, treatment engagement and equitable care. Researchers noted that stigma contributes to delayed diagnosis, lower adherence to treatment, reduced engagement with care and disparities in transplant evaluation and listing.1
The LDSS was designed to capture three recognised stigma mechanisms: internalised, anticipated and experienced stigma. Anticipated and experienced stigma were each further divided into family-related and healthcare-related domains.1
Alcohol-Associated Liver Disease Showed Strongest Stigma Burden
Patients rated statements using a five-point Likert scale. Example items included feelings of shame about liver disease, perceptions of being judged by relatives, and concerns that healthcare professionals may assume alcohol misuse or risky behaviour.1
Among the 211 participants, 128 had ALD. Patients with ALD consistently recorded higher stigma scores across all domains.1
Internalised stigma scores were significantly higher in the ALD group compared with the non-ALD group, while family-experienced stigma scores were also elevated. These differences remained significant after adjustment for factors including age, sex, race, education, mental health history and cirrhosis status.1
Researchers also found higher stigma scores among patients with cirrhosis, suggesting the scale may be sensitive to disease severity.1
LDSS May Support More Person-Centred Liver Care
The LDSS demonstrated strong reliability, convergent validity and a stable five-factor structure, supporting its use as a standardised measure of liver disease-specific stigma.1
However, the authors acknowledged several limitations. The scale was adapted from an existing substance use stigma framework rather than developed through formal qualitative interviews with patients with liver disease. In addition, some condition-specific experiences, including weight-related judgement in MASLD or contagion concerns in viral hepatitis, may not be fully captured.1
The findings highlight stigma as an important psychosocial factor in liver disease and may help clinicians and health systems better identify patients at risk of disengagement or poorer wellbeing while informing future quality improvement strategies.
Evidence from HIV care has shown that reducing stigma can improve testing uptake, linkage to care and treatment engagement, suggesting that systematically identifying stigma in liver disease could support earlier intervention and more patient-centred care pathways.2
References
- Zhang W et al. Development and psychometric evaluation of the Liver Disease Stigma Scale (LDSS). JHEP Rep. 2026;DOI:10.1016/j.jhepr.2026.101870.
- National AIDS Trust (NAT). Tackling HIV stigma: what works? Available at: https://nat.org.uk/wp-content/uploads/2024/07/Tackling-HIV-Stigma-What-works.pdf. Last accessed: 12 April 2026.
Featured image: Richelle on Adobe stock
