Methods: This population-based study, using an administrative database that covered >99% of 15 million residents, identified 476 incident patients with PSC-IBD. Patients were identified between 2002-2018 with followup through 2021. Median age at PSC diagnosis was 36 years and for IBD 34 years. 73% were diagnosed with IBD and had a median time to PSC diagnosis of 3.2 years. In the 27% with an initial diagnosis of PSC, the median time to IBD diagnosis was 0.9 years. The background comparator group consisted of 54,591 individuals diagnosed with IBD alone.
Key findings:
- 54% probability of remaining event-free at 10 years.
- There were 98 (21%) deaths and 80 (17%) who underwent liver transplant.
- There were 36 (7.5%) hepatopancreatobiliary cancers (HPBCa) in this cohort
- A diagnosis of HPBCa was associated with higher progression rates to liver transplant (TIR 20.9) and mortality (TIR 75.0).
- PSC–IBD patients had approximately 300-fold higher HPBCa and 4-fold higher CRC rates than IBD alone, underscoring their comparative substantial cancer burden.
- Mortality occurred more frequently post-colectomy (TIR 3.08) and post-cholecystectomy (TIR 3.85) relative to event-free PSC–IBD, but there were no differences in post-surgery incidence of cancer or transplant.
My take: This provides more granular data on the likely outcomes in individuals with PSC-IBD. Identifying individuals who are likely to develop a complicated course is not currently feasible. Current strategies rely on ongoing surveillance.
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