Autosomal dominant polycystic kidney: a life of obstacles, but we go ahead ...

Abstract

Autosomic polycystic kidney disease (ADPKD) can be defined as the most common of the genetic kidney diseases. The international research institute GfK conducted a survey to investigate the patient journey, meaning the impact of the disease on the patient population and their experiences and expectations regarding therapies and disease management. The study was conducted on 272 Italian ADPKD patients, using computer-assisted web interviewing (CAWI). Results show that ADPKD heavily impacts affected patients, who are worried and distressed about the prospects of the disease. ADPKD also significantly influences work and family settings, with a high impact on psychological, social and economic behaviours. More than one third of the patients do not expect a comfortable quality of life.