Bidirectional Psychosocial Burden in Autoimmune Hepatitis: Mental Health, Caregiver Strain, and the Potential Role of Patient Advocacy Programming.

BACKGROUND: Autoimmune hepatitis (AIH) is associated with substantial psychosocial burden, yet mental health challenges remain poorly characterized and caregiver experience has not been systematically described. AIMS: We aimed to (1) characterize mental health burden among AIH patients; (2) provide the first systematic description of caregiver burden and unmet needs in AIH; (3) compare patient and caregiver intervention priorities; and (4) explore whether attendance at a disease-specific educational conference was associated with changes in self-reported psychological distress. METHODS: Patients and caregivers attending the 2025 AIHA Patient Retreat completed an anonymous real-time survey (17 patient items; parallel caregiver items). A post-conference feedback survey captured retrospective pre/post-depression and anxiety self-ratings, analyzed as independent ordinal distributions using the Mann-Whitney U test given the absence of respondent-level pairing. RESULTS: Sixty-eight patients and 28 caregivers completed the survey. Most patients (88%) reported depressive symptoms on self-report items; 52% reported moderate-to-high anxiety. A bidirectional relationship was identified: 68% reported AIH symptoms worsened mood and 53% reported emotional distress worsened physical symptoms. Despite this, 32% rarely or never sought mental healthcare, and only 5% turned to their hepatologist for support. Caregivers reported high confidence (78%) alongside meaningful personal cost: 39% reported physical health effects and 62% cited work/family balance as their greatest barrier. Both groups identified expanded behavioral health resources as their top unmet need (32.8% each). In a separate post-conference survey (n=51), self-reported depression and anxiety scores were significantly lower after than before the conference (both p<0.05). CONCLUSION: AIH carries a substantial psychosocial burden affecting patients and caregivers. Both groups prioritize expanded mental health resources, and disease-specific community education may reduce psychological distress, warranting prospective evaluation.