ASN's Mission

ASN leads the fight to prevent, treat, and cure kidney diseases throughout the world by educating health professionals and scientists, advancing research and innovation, communicating new knowledge, and advocating for the highest quality care for patients.

learn more

Contact ASN

1401 H St, NW, Ste 900, Washington, DC 20005


The Latest on Twitter

Kidney Week

Abstract: TH-PO836

Using Tolvaptan for ADPKD: Feasibility and Patient-Reported Outcome in the Real-Life Setting

Session Information

Category: Genetic Diseases of the Kidneys

  • 1001 Genetic Diseases of the Kidneys: Cystic


  • Keaei, Mussa, University Hospital Cologne, Cologne, Germany
  • Todorova, Polina, University Hospital Cologne, Cologne, Germany
  • Oehm, Simon, University Hospital of Cologne, Cologne, Germany
  • Burkert, Katharina, University Hospital of Cologne, Cologne, Germany
  • Abend, Bastian W. w., University Hospital Cologne, Cologne, Germany
  • Benzing, Thomas, University of Cologne, Köln, Germany
  • Burst, Volker Rolf, Department 2 of Internal Medicine, Renal Division; University of Cologne, Cologne, Germany
  • Grundmann, Franziska, University of Cologne, Köln, Germany
  • Mueller, Roman-Ulrich, Dept. 2 of Internal Medicine, University of Cologne, Koeln, Germany

Considering the polyuria induced by V2R-antagonists, there is concern regarding tolerability of tolvaptan in the real-life setting. How do patients cope with the increased urine volume? Is adherence sufficient to reach the desired effect and how is the quality of life (QoL) affected?


In the AD(H)PKD study, we collect data of ADPKD patients presenting with the question whether they should take tolvaptan on a yearly basis. As one aspect, we use self-developed questionnaires to raise patient-reported outcomes, aiming e.g. at complications and adherence. In addition, QoL and pain are recorded using the SF-12 Health Survey and a translated version of the HALT-PKD pain questionnaire.


Since the start of the study in late 2015 we enrolled more than 560 patients. Urine volume increases to 5-7.5 liters in the majority of patients on tolvaptan. The largest increase occurs when starting the first dose step, whereas any further uptitration only leads to a minor change. Adherence to longterm-therapy is about 80%; most patients that discontinue tolvaptan report polyuria-associated events. The majority of patients do not consider the therapy a major problem. However, around two-thirds report that a minor adaptation of everyday life is necessary. The increased urine volume presents a burden rarely for ~65% and often or always for ~23%. Nonetheless, over 90% would recommend the therapy to other patients. Patients rarely skip a dose (1-2X p.m.) and do so equally spread for leasure-time, professional and medical reasons. QoL does neither differ between patients with or without tolvaptan in the whole cohort nor longitudinally in individual patients before and after starting.


Our data indicates that taking tolvaptan – despite the increase in urine volume – is well feasible for most patients without major adaptations to everyday life. Around 20% consider the polyuria a significant burden and about the same percentage discontinues the therapy in the long term. QoL is not affected by polyuria and nearly all participants would tell other patients to try the therapy if recommended by their nephrologist. Taken together, our data will help to increase confidence of nephrologists in using tolvaptan for ADPKD and to guide patient counselling when starting the treatment.


  • Commercial Support