Abstract

Diminished quality of life has been well characterized in patients with autoimmune hepatitis (AIH); however, the full spectrum of unmet needs is unclear. We hypothesized that there is a high burden of health-related unmet needs in patients with AIH, and this burden differs by socioeconomic status (SES). Members of the Autoimmune Hepatitis Association were invited online and by email to complete a modified version of the Systemic Lupus Erythematosus Patient Needs Questionnaire. Demographic and clinical data were also captured. Low SES was defined as annual household income <30 k, education level below high school, or moderate-high concern for transportation, food or housing. Multivariable logistic regression assessed the association between unmet health-related needs and SES. There were 433 participants; 89.8% identified as women, 16.2% lived outside the US, and 25.6% were classified as low SES. Over 70% of respondents reported at least one moderate-high need in the health-related unmet need domains. In multivariable logistic regression, patients in the low-SES group reported significantly higher odds of unmet needs compared to the moderate-high-SES group: for adequate information about side effects (OR 1.64, 95% CI 1.06-2.53, p = 0.026), opportunity to speak with others with AIH (OR 2.34, 95% CI 1.50-3.66, p < 0.001), healthcare professionals acknowledging patient emotions (OR 2.41, 95% CI 1.56-3.74, p < 0.001) and being taken seriously by medical providers (OR 2.09, 95% CI 1.34-3.28, p = 0.001). There is a high burden of health-related unmet needs in all patients with AIH that is exacerbated by low SES.

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