Background/Purpose:

ANCA-associated vasculitis (AAV) is a multisystem condition that results in significant level of morbidity and functional limitations for many patients. Previous studies showed that patients and clinicians prioritize aspects of AAV differently. This study was conducted to determine which aspects of AAV are considered by clinicians most relevant to determining patients’ function and general health.

Methods:

International vasculitis experts were identified by consulting with 3 major vasculitis societies and invited to participate in an email-based three-round Delphi exercise. The International Classification of Function, Disability and Health (ICF) was used to describe the studied aspects of AAV. The ICF is a general health status framework that describes health in terms of hierarchically organized categories from 4 interacting “components”: body functions (BF), body structures (BS), activities and participation (AP), and contextual factors (personal (PF) and environmental (EF)).

In the first open-ended round of the exercise participants were asked to list up to 30 items they considered most relevant to determining patients’ overall health for each of the ICF’s 4 components of health. The participants of the second and third rounds selected those aspects of AAV they consider most important, given the results of the previous rounds. Categories identified by at least 80% of participants of either of the 3 rounds were selected as representative of the clinicians’ perspective.

Results:

82 clinicians were invited to participate in this study and 44 responded; 27 clinicians participated in the first Delphi round, 30 in the second, and 36 in the third. Participants came from 17 countries and several relevant medical specialties (rheumatology, nephrology, pulmonology, otorhinolaryngology, internal medicine, immunology, and allied health professions).

After the third round 20 ICF categories were identified as important by > 80% of participants: 6 BF (energy level, seeing, hearing, pain, respiratory functions and renal function), 7 BS (eyes, ears (especially middle ear), nose (especially saddle nose and nasal crusting specifically), sinuses, lungs (also subglottic stenosis), kidneys, and peripheral nerves, 2 AP (carrying out daily routine and remunerative employment), and 3 EF (side effects of medications, support and relationships, and health services, systems and policies).

Conclusion:

This study identified aspects of AAV considered by clinicians as most relevant for determining the overall health of affected patients. The use of the standardised ICF classification allows comparison of these results across different perspectives. Among the categories identified in this study, “side effects of medications” is the only aspect of AAV that is not sampled by currently accepted core set of outcome measures for AAV which was recently subjected to an ICF-based analysis. An ongoing ICF-based study of the patient perspective on the most important aspects of AAV will allow for direct comparison of perspectives of patients and clinicians and help revise and enhance disease assessment in AAV for use in clinical research and routine care.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/clinicians-perspective-on-aspects-of-anca-associated-vasculitis-that-influence-patients-function-and-general-health-a-delphi-exercise-based-on-the-international-classification-of-function-disabili/