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

Objectives: The existing set of outcomes for anti-neutrophil cytoplasmic antibody (ANCA)-associated vasculitis
(AAV) needs to incorporate views of outcome measure stakeholders to meet the current standards of outcome
measurement proposed by the Outcome Measures in Rheumatology (OMERACT) initiative. This study identifies
domains that clinical experts (one group of stakeholders) consider to be important to determining the impact of AAV
using the International Classification of Functioning, Disability and Health (ICF), a framework that describes health
along four components: body functions, body structures, activities and participation, and contextual factors.
Method: An international group of clinicians with expertise in the clinical care of patients with vasculitis were
identified through consultation with three major vasculitis societies. The relevant domains were determined using a
three-round e-mail-based Delphi questionnaire.
Results: Eighty-two clinicians were invited to participate in this study and 41 responded. Nineteen domains were
identified as important by > 80% of participants: six body functions (energy, seeing, hearing, pain, respiratory, and
renal function), seven body structures (peripheral nerves, eye, ear, nose, sinuses, lungs (and airways), and kidneys),
three activities and participation (carrying out daily routine, remunerative employment, and recreation and leisure), and
three environmental factors (medications, support and relationships, and health services, systems, and policies).
Conclusions: Clinical experts focus on the physiological effects of AAV with less importance given to the effect of
AAV on patients’ activities and participation in life situations and the role of contextual factors. This study represents a
step towards incorporating views of a range of stakeholders into disease assessment in AAV.

Aim

The existing set of outcomes for anti-neutrophil cytoplasmic antibody (ANCA)-associated vasculitis
(AAV) needs to incorporate views of outcome measure stakeholders to meet the current standards of outcome
measurement proposed by the Outcome Measures in Rheumatology (OMERACT) initiative. This study identifies
domains that clinical experts (one group of stakeholders) consider to be important to determining the impact of AAV
using the International Classification of Functioning, Disability and Health (ICF), a framework that describes health
along four components: body functions, body structures, activities and participation, and contextual factors.

Contributors

N. Milman, A. Boonen, P. A. Tugwell, P. Merkel and O. V. W. G. for the

Publication

Journal: Scandinavian Journal of Rheumatology
Volume: 46
Issue:
Pages: -
Year: 2017
DOI: 10.1080/03009742.2016.1188980

Further Study Information

Current Stage: Not Applicable
Date:
Funding source(s): N. Milman was supported by a UCB-CRA-TAS Post-Graduate Rheumatology Fellowship and a Ottawa Hospital Department of Medicine Fellowship. The work of the VCRC-OMERACT Vasculitis Working Group, of which this project is part of, is sponsored by theVasculitis Clinical Research Consortium (VCRC), which is part of the Rare Diseases Clinical Research Network (RDCRN), an initiative of the Office of Rare Diseases Research (ORDR), National Center for Advancing Translational Sciences (NCATS). The VCRC is funded through collaboration between NCATS and the National Institute of Arthritis and Musculoskeletal and Skin Diseases (U54AR057319 and U01 AR51874 04), and has received funding from the National Center for Research Resources (U54 RR019497). This research was also supported by Contract Number 1IP2 PI000603 from the Patient Centered Outcomes Research Institute (PCORI).

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Method(s)

- Delphi process

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