Dr Justin Chua1,2,3, Dr Simon Carter4, A/Prof Jessica Ryan1,2,3, Prof Kevan Polkinghorne1,2,5, Prof Richard Kitching1,3,6
1Department of Nephrology, Monash Health, Clayton, Australia, 2Monash University Department of Medicine, Clayton, Australia, 3Monash University Centre for Inflammatory Diseases, Department of Medicine, Clayton, Australia, 4Department of Nephrology, Royal Children’s Hospital, Parkville, Australia, 5School of Public Health and Preventive Medicine, Monash University, Clayton, Australia, 6Department of Paediatric Nephrology, Monash Children’s Hospital, Clayton, Australia
Biography:
Dr. Justin Chua is a nephrologist and general medicine physician working at Monash Health and Latrobe Regional Health in Victoria. He is completing a PhD through Monash University and Monash Health titled, Defining the Landscape of ANCA-Associated Vasculitides in Australia to Improve Care, under the supervision of Prof. Richard Kitching. He is a recipient of the NHMRC Postgraduate and Monash Graduate Excellence Scholarships.
Aim:
To prioritise ANCA-associated vasculitis (AAV) outcomes captured in the Australian and New Zealand Vasculitis Society Quality and Disease Registry (ANZVASC-QDR).
Background:
Annual reports from the ANZVASC-QDR will provide information about AAV and its care, but no studies define reporting outcomes for AAV registries.
Methods:
Participants were clinicians, AAV patients and their caregivers from Australia, New Zealand, UK and Ireland, recruited by email and online advertising. Two Delphi survey rounds (Likert scale) assessed 30 outcomes captured in the ANZVASC-QDR, followed by a pairwise comparison round ranking the top 15 outcomes. This process determined eight final outcomes, with mandatory inclusion of the two highest-ranked outcomes for both clinician and patient/caregiver groups, and the top-ranked patient-reported outcome measure (PROM). Scores and rankings of both groups were equally weighted.
Results:
233 participants (108 clinicians, 125 AAV patients/caregivers) completed the first round. 189 (81.1%) completed all three rounds (85 clinicians,104 AAV patients/caregivers), including 143 (75.7%) Australian and 11 (5.8%) New Zealander participants. The top two ranked outcomes for clinicians were mortality and kidney failure, and for patients/caregivers were vasculitis relapse and vasculitis activity. The top-ranked PROM was the AAV Patient-Reported Outcome tool (AAV-PRO). The remaining top-ranked consensus outcomes were non-glucocorticoid immunosuppressant use, glucocorticoid-associated complications and kidney function. Clinicians more highly prioritised mortality (physician-rank 1, patient-rank 12), kidney failure (physician-rank 2, patient-rank 8) and kidney function (physician-rank 5, patient-rank 10), while patients more highly prioritised the AAV-PRO (patient-rank 3, physician-rank 12).
Conclusion:
This consensus process defines the community’s prioritised reportable AAV registry outcomes, comprising objective clinical outcomes (mortality and kidney outcomes), disease status (activity and relapses), treatment related outcomes (type of immunosuppression given and glucocorticoid-associated complications) and an AAV-specific PROM.