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Validation of the German version of the ANCA-associated vasculitis patient-reported outcome questionnaire
A. Niesmann1, M. Jacobs2, T. Filla3, C. Düsing4, J. Mucke5, J.G. Richter6, N. Ruffer7, M.C. Van Saan8, O. Sander9, A. Stütz10, M. Schneider11, M. Schmitz12, G. Chehab13, A. Kernder14
- Department of Rheumatology, University Hospital Düsseldorf, Medical Faculty of Heinrich Heine University Düsseldorf; and Hiller Research Center, University Hospital Düsseldorf, Medical Faculty of Heinrich Heine University Düsseldorf, Germany.
- Department of Rheumatology, University Hospital Düsseldorf, Medical Faculty of Heinrich Heine University Düsseldorf; and Hiller Research Center, University Hospital Düsseldorf, Medical Faculty of Heinrich Heine University Düsseldorf, Germany.
- Department of Rheumatology, University Hospital Düsseldorf, Medical Faculty of Heinrich Heine University Düsseldorf; and Hiller Research Center, University Hospital Düsseldorf, Medical Faculty of Heinrich Heine University Düsseldorf, Germany.
- Department of Rheumatology, University Hospital Düsseldorf, Medical Faculty of Heinrich Heine University Düsseldorf; and Hiller Research Center, University Hospital Düsseldorf, Medical Faculty of Heinrich Heine University Düsseldorf, Germany.
- Department of Rheumatology, University Hospital Düsseldorf, Medical Faculty of Heinrich Heine University Düsseldorf; Hiller Research Center, University Hospital Düsseldorf, Medical Faculty of Heinrich Heine University Düsseldorf; and Ruhr University Bochum, Rheumazentrum Ruhrgebiet, Herne, Germany.
- Department of Rheumatology, University Hospital Düsseldorf, Medical Faculty of Heinrich Heine University Düsseldorf; and Hiller Research Center, University Hospital Düsseldorf, Medical Faculty of Heinrich Heine University Düsseldorf, Germany.
- III Department of Medicine, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
- Department of Rheumatology, University Hospital Düsseldorf, Medical Faculty of Heinrich Heine University Düsseldorf; and Hiller Research Center, University Hospital Düsseldorf, Medical Faculty of Heinrich Heine University Düsseldorf, Germany.
- Department of Rheumatology, University Hospital Düsseldorf, Medical Faculty of Heinrich Heine University Düsseldorf; and Hiller Research Center, University Hospital Düsseldorf, Medical Faculty of Heinrich Heine University Düsseldorf, Germany.
- Department of Rheumatology, University Hospital Düsseldorf, Medical Faculty of Heinrich Heine University Düsseldorf; and Hiller Research Center, University Hospital Düsseldorf, Medical Faculty of Heinrich Heine University Düsseldorf, Germany.
- Department of Rheumatology, University Hospital Düsseldorf, Medical Faculty of Heinrich Heine University Düsseldorf; and Hiller Research Center, University Hospital Düsseldorf, Medical Faculty of Heinrich Heine University Düsseldorf, Germany.
- Städtisches Klinikum Solingen GmbH, Solingen, Germany.
- Department of Rheumatology, University Hospital Düsseldorf, Medical Faculty of Heinrich Heine University Düsseldorf; Hiller Research Center, University Hospital Düsseldorf, Medical Faculty of Heinrich Heine University Düsseldorf; and Department of Rheumatology and Clinical Immunology, KEM Klinken Essen Mitte, Essen, Germany.
- Department of Rheumatology, University Hospital Düsseldorf, Medical Faculty of Heinrich Heine University Düsseldorf; Hiller Research Center, University Hospital Düsseldorf, Medical Faculty of Heinrich Heine University Düsseldorf; and Ruhr University Bochum, Rheumazentrum Ruhrgebiet, Herne, Germany. anna.kernder@elisabethgruppe.de
CER19258
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PMID: 41810854 [PubMed]
Received: 29/08/2025
Accepted : 23/12/2025
In Press: 09/03/2026
Abstract
OBJECTIVES:
This study aimed to validate the German version of the ANCA-associated vasculitis patient-reported outcome (AAV-PRO) measure by evaluating its psychometric properties.
METHODS:
Our study was a prospective cohort study of German speaking AAV patients, recruited in the rheumatology outpatient clinics at the University Hospital Düsseldorf. The questionnaire includes 29 items across six domains, each rated from 0 to 4 points. Participants completed the AAV-PRO (German) at three time points. They also completed the EuroQol-5D-5L (EQ-5D-5L) and self-reported their vasculitis status. The Birmingham Vasculitis Activity Score version 3 (BVASv3) and Vasculitis Damage Index (VDI) were completed by the treating physicians.
RESULTS:
70 AAV patients (48.5% female) participated. Overall, fatigue was the most prevalent symptom. Female AAV patients reported higher symptom burden across all domains and had a higher total score (Z=-2.55, p=0.011). The AAV-PRO (German) demonstrated good internal consistency in the domains “social and emotional impact”, “concerns about the future” and “physical function” (Cronbach’s alpha≥0.83). The domain “systemic symptoms severity” demonstrates acceptable to good consistency. The other domains demonstrated insufficient consistency. All domains showed high test-retest reliability (Pearson r≥0.8). BVASv3 and VDI showed limited correlations with the AAV-PRO (German) domains. Construct validity was supported by moderate to strong correlations with the EQ-5D-5L in five domains. Patients with self-reported active disease had statistically significantly higher mean scores than those with self-reported inactive disease in three domains.
CONCLUSIONS:
Our study supports the use of the AAV-PRO (German). However, two domains need to be interpreted carefully.
