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Summary Background and Aims 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). Methods 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. Results 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). Conclusion 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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Singleton et al. (2024) studied this question.
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