Medical Management of Polycystic Liver Disease: A Position Statement From the European Reference Network on Hepatological Diseases

A new ERN RARE-LIVER position paper presents expert consensus on the use of somatostatin analogues in the management of polycystic liver disease.

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This ERN RARE-LIVER position statement offers practical, consensus-based guidance on the use of somatostatin analogues (SSAs) in managing polycystic liver disease (PLD), a condition characterized by progressive hepatomegaly and related symptoms. Based on expert consensus (Delphi process), SSA therapy is indicated for symptomatic patients with diffuse disease and significant hepatomegaly, irrespective of kidney function. Treatment goals prioritize symptom relief, assessed using validated Patient-Reported Outcome Measures (PROMs like PLD-Q/POLCA) and liver volumetry (TLV). Therapy should continue until benefits cease, as early discontinuation risks volume rebound. While SSAs are off-label, Lanreotide 120mg monthly was the preferred agent among surveyed experts. Challenges remain regarding reimbursement access across Europe.

The full publication is available here.