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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.

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Kidney Week

Abstract: SA-PO498

Identifying Patient-Important Outcomes in Polycystic Kidney Disease: An International Nominal Group Technique Study

Session Information

  • ADPKD: Clinical Studies
    October 27, 2018 | Location: Exhibit Hall, San Diego Convention Center
    Abstract Time: 10:00 AM - 12:00 PM

Category: Genetic Diseases of the Kidney

  • 1001 Genetic Diseases of the Kidney: Cystic


  • Cho, Yeoung Jee, Princess Alexandra Hospital, Brisbane, Queensland, Australia
  • Gutman, Talia M., Centre for Kidney Research, Bondi Junction, New South Wales, Australia
  • Rangan, Gopi, Westmead Institute for Medical Research, The University of Sydney, Sydney, New South Wales, Australia
  • Craig, Jonathan C., University of Sydney/Children's Hospital, Sydney, New South Wales, Australia
  • Viecelli, Andrea K., Princess Alexandra Hospital, Brisbane, Queensland, Australia
  • Geneste, Claire, University Francois Rabelais, Tours, France
  • Kim, Yaerim, Seoul National University Hospital, Seoul, Korea (the Republic of)
  • Ahn, Curie, Seoul National University Hospital, Seoul, Korea (the Republic of)
  • Kim, Hyunsuk, Chuncheon Sacred Heart Hospital, Chuncheon, Gangwon-Do, Korea (the Republic of)
  • Johnson, David W., Princess Alexandra Hospital, Brisbane, Queensland, Australia
  • Tong, Allison, The University of Sydney, Seven Hills, New South Wales, Australia

Group or Team Name

  • on behalf of SONG-PKD Steering Committee

Patients with autosomal dominant polycystic kidney disease (ADPKD) are at increased risk of premature mortality, morbidities, and complications, which severely impair quality of life. However, patient-centered outcomes are not consistently reported intrials in ADPKD, which can limit shared decision-making. We aimed to identify outcomes important to patients and caregivers and the reasons for their priorities.


Patients with ADPKD and their caregivers were purposively selected from eight centers across Australia, France and Republic of Korea. Participants identified ranked and discussed outcomes for trials in ADPKD. We calculated an importance score (0-1) for each outcome and conducted thematic analyses.


Across 17 groups, 154 participants (121 patients, 33 caregivers) aged 19 to 78 (mean 54.5 years) identified 55 oucomes. The 10 highest ranked outcomes were: kidney function (mean importance score 0.36), end stage kidney disease (0.32), survival (0.21), cyst size/growth (0.20), cyst pain/bleeding (0.18), blood pressure (0.17), ability to work (0.16), cerebral aneurysm/stroke (0.14), mobility/physical function (0.12), and fatigue (0.12). Three themes were identified: threatening sembalance of normality, inability to control, and making sense of the diverse risks.


For patients with ADPKD and their caregivers, kidney function, delayed progression to end stage kidney disease and survival were the highest priorities, and were focused on achieving normality, and maintaining control over health and lifestyle. Implementing these patient-important outcomes may improve the meaning and relevance of trials to inform clinical care in ADPKD.

Mean importance score by patient status


  • Private Foundation Support