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Developing Consensus-Based Outcome Domains for Trials in Children and Adolescents With CKD: An International Delphi

Charlotte Logeman1, Chandana Guha1, Martin Howell1

  • 1Sydney School of Public Health, The University of Sydney, NSW, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.

American Journal of Kidney Diseases : the Official Journal of the National Kidney Foundation
|July 14, 2020
PubMed

Insights

Prioritizing outcomes in pediatric chronic kidney disease (CKD) trials is crucial. Key outcomes like mortality, kidney function, and life participation are vital for shared decision-making in children with CKD.

Area of Science:

  • Nephrology
  • Pediatric Research
  • Patient-Reported Outcomes

Background:

  • Inconsistent outcomes and lack of patient-reported outcomes in pediatric chronic kidney disease (CKD) trials hinder shared decision-making.
  • The Standardized Outcomes in Nephrology (SONG)-Kids initiative addresses this gap by seeking consensus on critical outcomes.

Purpose of the Study:

  • To generate a consensus-based, prioritized list of critically important outcomes for trials involving children with CKD.
  • To enhance consistency in reporting outcomes that matter to patients, caregivers, and healthcare professionals.

Main Methods:

  • An international, online, 2-round Delphi survey was conducted in English, French, and Hindi.
  • Participants included patients (aged 8-21), caregivers, and healthcare professionals (HCPs) who rated outcome importance.
  • A 9-point Likert scale and Best-Worst Scale were used to assess outcome prioritization.

Main Results:

  • 557 participants from 48 countries completed Round 1, with 312 completing Round 2.
  • Mortality, kidney function, life participation, blood pressure, and infection were top outcomes for all groups.
  • Patients prioritized lifestyle outcomes like academic performance and ability to travel more than caregivers/HCPs.

Conclusions:

  • Mortality, life participation, kidney function, and blood pressure are consistently critical outcomes in pediatric CKD trials.
  • Patients' perspectives on lifestyle outcomes should be integrated into trial outcome selection.
  • Establishing consensus on critically important outcomes will improve reporting and support meaningful decision-making for children with CKD.
Abstract

Keywords:
Chronic kidney disease (CKD)Delphi surveyadolescentsblood pressurecaregiverschildrenclinical trial designconsensuscore outcome setkidney functionlife participationmortalityoutcome measuresoutcomespatient-centered outcomespediatricspriority rankingtreatment goals

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