Affiliation:
1. Department of Medicine Indiana University School of Medicine Indianapolis Indiana USA
2. Department of Biostatistics and Health Data Science, Indiana University School of Medicine Indianapolis Indiana USA
3. Division of Gastroenterology and Hepatology, Department of Medicine Indiana University School of Medicine Indianapolis Indiana USA
Abstract
SummaryBackground and AimsDiminished 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).MethodsMembers 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.ResultsThere 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).ConclusionThere is a high burden of health‐related unmet needs in all patients with AIH that is exacerbated by low SES.