Establishing a core outcome measure for pain in patients with autosomal dominant polycystic kidney disease: A consensus workshop report

Patrizia Natale, Ronald D. Perrone, Allison Tong, Tess Harris, Elyssa Hannan, Angela Ju, Eva Burnette, Niek F. Casteleijn, Arlene Chapman, Sarah Eastty, Ron T. Gansevoort, Marie Hogan, Shigeo Horie, Bertrand Knebelmann, Richard Lee, Reem A. Mustafa, Richard Sandford, Amanda Baumgart, Jonathan C. Craig, Gopala K. RanganBénédicte Sautenet, Andrea K. Viecelli, Noa Amir, Nicole Evangelidis, Chandana Guha, Charlotte Logeman, Karine Manera, Andrea Matus Gonzalez, Martin Howell, Giovanni F.M. Strippoli, Yeoungjee Cho

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Background: Pain is the highest prioritized patient-reported outcome in people with autosomal dominant polycystic kidney disease (ADPKD) but remains infrequently and inconsistently measured in clinical trials and poorly managed in clinical settings. A recently completed systematic review of pain in ADPKD identified 26 different outcome measures. None of these measures were considered appropriate as a core outcome measure due to the lack of patient-important dimensions, inadequate content, relatively long duration of completion time and limited evidence to support psychometric robustness. Methods: We convened an international Standardized Outcomes in Nephrology-Polycystic Kidney Disease consensus workshop involving 21 patients/caregivers and 40 health professionals (clinicians, nurses, researchers, policy makers and industry representatives) from 18 countries to discuss the identification or development of a core outcome measure for pain. Results: Four themes were identified highlighting fundamental issues for the measurement of pain in ADPKD: distressing and disrupting life participation; variability and ambiguity in defining pain; stigma, frustration and adaptation to pain; and ensuring validity and feasibility of pain measures. Conclusions: Existing measures were found to be insufficient in capturing pain as a core outcome and there was consensus on the need for a new validated measure that is simple, succinct and addresses the impact of pain on life participation. This measure will facilitate the appropriate prioritization of pain in all trials and guide clinical decision making in people with ADPKD.

Original languageEnglish
Pages (from-to)407-416
Number of pages10
JournalClinical Kidney Journal
Issue number3
Publication statusPublished - Mar 2022


  • measure
  • pain
  • patient-reported outcomes
  • workshop


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