Health related Quality of Life and medication adherence in adult patients with autoimmune hepatitis: a multicentre, cross-sectional study

Characterization of the relationship between HRQL and factors associated with HRQL including anxiety/depression, medication adherence, and clinical features in autoimmune hepatitis (AIH) patients.

Study design/Methods or/PROMS:
- Longitudinal study (baseline, 2-year-FU, 5-year FU), paper-pencil-survey, Castor database
- PROMS: General questions, SF-12 (QoL), EQ-5D-5L (QoL), GAD-7 (anxiety), PHQ-9 (depression), MFIS (fatigue), SSS-8 (somatic symptoms severity), SSD-12 (psychological reaction), BMQ (beliefs about medicine), VAS (adherence), MLQ (meaning in life)

Target population:
Patients with AIH (age >18 years), aim to include 1000 patients

Dutch, German, Hungarian, Polish, Italian, Portuguese, English, Danish

Radboudumc (The Netherlands), Medical University of Warsaw (Poland), Universitätsklinikum Hamburg-Eppendorf (Germany), University of Debrecen (Hungary), Maastricht UMC+ (The Netherlands), Hvidovre University Hospital (Denmark), Erasmus MC (The Netherlands), Centro Hospitalar e Universitário de Coimbra (Portugal), University of Milano-Bicocca (Italy), Aarhus University Hospital (Denmark), Hannover Medical School (Germany), Queen Elizabeth Hospital (United Kingdom)

Inclusion and exclusion criteria:
- Inclusion criteria: definite or probable AIH (simplified criteria), age ≥18 year
- Exclusion criteria: LTx, HCC
Study period/begin/stage:
Study start: 01-11-2020

Open for inclusions: yes

Contact details:
Tom Gevers (, Romée Snijders (