| Summary: | Autosomal dominant polycystic kidney disease (ADPKD) is the most common genetic kidney disease. PKD is a multisystem disorder associated with multiple bilateral renal cysts, slowly increasing kidney size and progressive chronic kidney disease. Approximately 50% of individuals with PKD will require renal replacement therapy by the sixth decade of life. More than 80% will also have multiple liver cysts, which can lead to local pressure effects. Cerebral haemorrhage, secondary to rupture of a berry aneurysm, occurs in up to 8% of individuals. Mitral valve prolapse occurs in up to 25% of patients. Patients with ADPKD have a worsening in the quality of life and a burden of disease similar to cancer patients. The quality of correct information given to patients and a warm reception have a positive impact on patients with ADPKD and contribute to an efficacious treatment program. AIRP conducted a survey to investigate the ADPKD patient journey, meaning the personal experience and expectations of people regarding factors such as disease management, relationships with the nephrologists and their team, and therapies. The survey was conducted on 370 people with ADPKD, using computer-assisted web interviewing (CAWI). The results show that patients with ADPKD with a good relationship with their care team, both nephrologist and nurse, respond better to therapies. Warm reception, dialogue, communication, support, clear explanation, reassurance and guidance altogether contribute to a successful treatment of every single person with ADPKD.
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