Clinicians' perspective on key domains in ANCA-associated vasculitis: a Delphi exercise

Area of Science:

• Rheumatology
• Clinical Outcomes Research
• Health Services Research

Background:

• Current outcome measures for anti-neutrophil cytoplasmic antibody (ANCA)-associated vasculitis (AAV) require stakeholder input.
• The Outcome Measures in Rheumatology (OMERACT) initiative sets standards for outcome measurement.

Purpose of the Study:

• To identify domains important for assessing AAV impact from a clinical expert perspective.
• To utilize the International Classification of Functioning, Disability and Health (ICF) framework.
• To incorporate stakeholder views into AAV outcome measurement.

Main Methods:

• An international Delphi questionnaire was used.
• Clinicians with AAV expertise were identified via vasculitis societies.
• A three-round e-mail-based survey was conducted.

Main Results:

• 41 out of 82 invited clinicians responded.
• Nineteen domains were deemed important by over 80% of participants.
• Key domains included body functions (e.g., energy, pain), body structures (e.g., lungs, kidneys), activities/participation (e.g., daily routine, employment), and environmental factors (e.g., medications, health services).

Conclusions:

• Clinical experts prioritize AAV's physiological effects over its impact on daily life and contextual factors.
• This study is a step toward a more comprehensive, stakeholder-informed approach to AAV assessment.