Development and psychometric evaluation of the Liver Disease Stigma Scale (LDSS)

Chronic liver disease (CLD) is increasingly prevalent, and stigma remains a barrier to care, particularly for alcohol-associated liver disease (ALD). No validated instruments measure liver disease-specific stigma. Thus, we developed and evaluate here the Liver Disease Stigma Scale (LDSS).

We conducted a cross-sectional study of 211 patients from inpatient and outpatient hepatology services at a tertiary center. Participants were categorized as ALD (n = 128) or non-ALD (n = 83). The LDSS assessed internalized, anticipated (family and healthcare), and experienced (family and healthcare) stigma. Psychometric evaluation included exploratory factor analysis (EFA), internal consistency (Cronbach's α), and convergent validity with the Substance Use Stigma Mechanisms Scale (SU-SMS) and mental health symptoms. Known-groups validity was assessed using t tests and adjusted linear regression.

EFA supported a five-factor structure accounting for 73.7% of variance. Subscale reliability was excellent (α = 0.90-0.97). LDSS subscales showed strong convergent validity with corresponding SU-SMS subscales (r = 0.43-0.80) and moderate correlations with mental health (r = 0.18-0.60). Known-groups validity was demonstrated by higher stigma scores among participants with ALD, particularly for internalized stigma (2.34 vs. 1.50, p <0.001, d = 0.85) and family-experienced stigma (1.80 vs. 1.18, p <0.001, d = 0.77). After adjustment, differences in internalized and family-experienced stigma remained significant.

The LDSS demonstrated a stable five-factor structure, strong reliability, and good convergent validity, supporting its use as a psychometrically sound measure of liver disease-specific stigma. Patients with ALD showed higher stigma levels, underscoring the clinical relevance of the scale and the need for further research on stigma and outcomes in liver disease. However, findings require validation in larger, more diverse, and independent samples.

The LDSS fills an important measurement gap by providing the first multidimensional instrument specifically developed to assess stigma among adults with CLD. Stigma levels were higher among individuals with ALD, underscoring the relevance of stigma as a psychosocial factor that can influence engagement and wellbeing in this population. The scale provides a standardized and psychometrically robust approach for assessing stigma and offers a foundation for future research and quality improvement efforts aimed at identifying stigma burden and informing targeted clinical or behavioral strategies. These findings could help clinicians, researchers, and health systems more systematically understand how stigma shapes patient experience and consider approaches to promote more equitable and person-centered liver disease care.