This Pilot study will enable development & assessment of a Polycystic Liver Disease-specific patient reported outcomes questionnaire (PLD-Q). Polycystic liver disease (PLD) is characterized by the formation of numerous cysts in the liver, and can lead to severe symptomatic hepatomegaly. It is common in patients with autosomal dominant polycystic liver disease (ADPLD) and autosomal dominant polycystic kidney disease (ADPKD).
Polycystic liver, defined by > 20 liver cysts on imaging
- Patients unable to speak or read the English properly
- History of kidney or liver transplantation
- Current use of experimental drugs (e.g. lanreotide, octreotide)
- Recent liver resection or major surgery
- Other comorbidities that can affect the outcome of the questionnaire, as deemed by the investigators
Marie C. Hogan