Abstract Background/Aims We aimed to study real-world clinical pathways and treatment for all people with ANCA-associated vasculitis (AAV) in England using multiple NHS datasets available to the National Disease Registration Service (NDRS, NHS England), including Hospital Episode Statistics, ONS Mortality and Primary Care prescribing. Methods We used validated methodology to identify patients with an ICD-10 coded diagnosis of granulomatosis with polyangiitis (GPA), microscopic polyangiitis (MPA) or eosinophilic granulomatosis with polyangiitis (EGPA). Applying an algorithm to best identify diagnosis date, we generated a whole-population cohort of 3626 patients (GPA: 2089; MPA: 903; EGPA: 634) diagnosed between 2016 and 2019. We used process mining to explore healthcare pathways and events (such as mortality and treatments including oral steroids) one year prior and up to 3 years post-diagnosis. Results In the year prior to (but not including) diagnosis, 63% of patients had an outpatient attendance in a specialty plausibly due to early symptoms of AAV. This varied according to disease subtype. The most frequent specialty attendance for GPA was otolaryngology (29% of patients) and for EGPA was respiratory medicine (37% of patients). For MPA there was less prior activity, consistent with shorter prodrome compared to other subtypes. Mortality rate was 10% at 3 years (371/3626), highest in the first 30 days post-diagnosis. Amongst all survivors at 3 years, ≥1 out-patient attendance/month was observed in approximately 50%. 46% had ≥1 steroid prescription in the 90-day period prior to the end of 3 years. Conclusion Process mining of whole-population data indicates potential opportunities for earlier diagnosis amongst patients receiving out-patient care who are subsequently diagnosed with AAV. At 3 years post-diagnosis, there continued to be high burden of healthcare utilisation and steroid dependency, highlighting ongoing need for better treatment strategies. This reproducible methodology can be scaled to support analysis of impact of new therapies on pathways and outcomes. Disclosure S. McPhail: None. N. Onaiwu: None. F.A. Pearce: Grants/research support; FAP has received research grant funding from CSL Vifor. CSL Vifor had no role in the design, conduct or interpretation of this study. N. Petersen: None. S. Winters: None. P.C. Lanyon: Consultancies; PCL has attended Advisory Board meetings for CSL Vifor and AstraZeneca. Honoraria; PCL has received honoraria from CSL Vifor and AstraZeneca. Grants/research support; PCL has received research grant support from CSL Vifor. CSL Vifor had no role in the design, conduct or interpretation of this study.
McPhail et al. (Wed,) studied this question.