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. 2025 Jun 26;20(8):1041-1050.
doi: 10.2215/CJN.0000000724.

Core Outcome Measure for Life Participation in Patients with CKD: Standardized Outcomes in Nephrology Workshops Report

Anastasia Hughes  1   2 , Andrea Matus Gonzalez  1   2 , Noa Amir  1   2 , Macarena Arancibia Garcia  3 , Fergus J Caskey  4 , Lilia Cervantes  5 , Yeoungjee Cho  6   7   8 , Rosanna Cazzolli  1   2 , Ellen Dobrijevic  1   2 , Meghan J Elliott  9 , Janine Farragher  10 , Alejandro Ferreiro  11 , Sharlene Greenwood  12   13 , Chandana Guha  1   2 , Martin Howell  1   2   14 , Brooke M Huuskes  15 , Mauro Lampo  16 , Adeera Levin  17 , Eduardo Lorca  18   19 , Ana Malvar  20 , Karine Manera  1   2 , Claudio A Mascheroni  21 , Haydee Mellado  22 , Soledad Molina  1   2   3   4   5   6   7   8   9   10   11   12   13   14   15   16   17   18   19   20   21   22   23   24   25   26   27   28   29 , Matias Monkowski  16 , Javier Recabarren Silva  1   2 , Bénédicte Sautenet  23   24   25 , Nicole Scholes-Robertson  1   2 , Alejandro Sepulveda  3 , Amanda Sluiter  1   2 , Laura Sola  26   27 , Armando Teixeira-Pinto  1   2 , Herman Trimarchi  16 , Anita van Zwieten  1   2 , Jorge Gutiérrez Ventura  1   2 , Andrea K Viecelli  6   7   8 , Bill Wang  28 , Linda Weng  29 , Germaine Wong  1   2 , Rebecca Wu  1   2 , Allison Jaure  1   2 ; SONG-CKD Life Participation Workshop Investigators
Collaborators, Affiliations

Core Outcome Measure for Life Participation in Patients with CKD: Standardized Outcomes in Nephrology Workshops Report

Anastasia Hughes et al. Clin J Am Soc Nephrol. .

Abstract

Key Points:

  1. Patients, caregivers, and health professionals support the use of standardised outcomes in nephrology - life participation as the core outcome measure for life participation in patients with CKD.

  2. Further work is needed to pilot and validate the standardised outcomes in nephrology - life participation measure in patients with CKD before the need for KRT.

  3. A core outcome measure will support consistent reporting of life participation in trials in patients with CKD.

Background: Life participation is of critical importance to patients with CKD not requiring KRT, their caregivers, and health professionals. However, life participation is rarely and inconsistently assessed in trials in CKD. The aim was to establish a core outcome measure for life participation in patients with CKD not requiring KRT.

Methods: An online (English language) and an in-person (Spanish language) consensus workshop, 1 hour in length, were held in March and April 2024, respectively, and were held to discuss and establish a meaningful, relevant, and feasible core patient-reported outcome measure for life participation for trials in CKD. Transcripts were analyzed thematically.

Results: Workshops included 130 participants, including 74 patients and caregivers, and 56 health professionals, from 18 countries. Four themes were identified. Enabling interpretation within individual contexts and circumstances included considering relevance to patients' own priorities, capturing key life activities common to all patients, reflecting the goal of leading a fulfilling life, acknowledging the variability and multiplicity of domains, and facilitating linguistic and cultural translation. Having broad clinical relevance across CKD meant covering the spectrum of CKD stages and diagnoses and allowing comparison across treatment stages. Supporting widespread implementation entailed minimizing burden of administration and completion, establishing psychometric robustness, seeking endorsement to legitimize the measure, and ensuring accessibility and acceptability across different settings. Highlighting opportunities to address life participation captured promoting person-centered clinical care and generating ideas for novel interventions to improve life participation.

Conclusions: A core outcome measure for life participation in patients with CKD should enable a patient to interpret life participation in their own context, have applicability across the CKD population, and be psychometrically robust and feasible to implement. Measuring life participation in a consistent and meaningful way across trials can better support patient-centered decision making and outcomes.

Keywords: CKD; CKD nondialysis; chronic kidney disease; chronic renal insufficiency; clinical nephrology; clinical trial; conservative management; kidney disease; patient-centered care; quality of life.

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Conflict of interest statement

Disclosure forms, as provided by each author, are available with the online version of the article at http://links.lww.com/CJN/C322.

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