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.