Many patients don’t understand terms like ‘end-stage kidney disease’ which adds to their distress and even trauma when discussing renal health with doctors, a small study suggests.

Researchers conducted focus groups with 54 patients with chronic kidney disease and 13 family caregivers from Australia, the UK and US.

The goal was to determine how well participants understood, and how they felt when they heard, a variety of terms related to their diagnosis including: kidney, renal, chronic kidney disease, end-stage kidney disease, kidney failure and descriptors for kidney function.

“We know that the terms used to describe kidney health are inconsistent, difficult to understand and conceptualised differently by patients and clinicians,” said lead study author Professor Allison Tong of the University of Sydney.