Original InvestigationDeveloping Consensus-Based Outcome Domains for Trials in Children and Adolescents With CKD: An International Delphi Survey
Section snippets
Study Design
The Delphi survey has been used to generate consensus on core outcomes to be used in trials for different patient populations, including children with other medical conditions.17, 18, 19, 20, 21, 22 The SONG-Kids Delphi survey was administered online with 2 rounds. Participants prioritized outcomes for trials in children across all stages of CKD. The survey was conducted in 3 languages (English, French, and Hindi). The English survey was translated into French and Hindi by a bilingual HCP and
Participant Characteristics
In round 1, 557 participants across 48 countries completed the survey, of whom 72 (13%) were patients, 132 (24%) were family members/caregivers, and 353 (63%) were HCPs. By language, 533 (96%; 71 patients, 123 caregivers, and 339 HCPs) completed the English survey, 23 (4%; 1 patient, 8 caregivers, and 14 HCPs) completed the French survey, and 1 (0.1%; 1 caregiver) completed the survey in Hindi. In round 2, a total of 312 (56% overall retention rate) participants from 48 countries completed the
Discussion
Mortality, kidney function, life participation, blood pressure, cardiovascular disease, and infection were the outcomes of highest priority to children with CKD, their caregivers, and HCPs. The top 4 outcomes (mortality, kidney function, life participation, and blood pressure) were consistently within the top 5 across all 3 stakeholder groups. For patients, infection was in the top 5, and self-esteem and depression were in the top 5 for caregivers and HCPs, respectively. Collectively, these
Article Information
Authors’ Full Names and Academic Degrees
Charlotte Logeman, MPH, Chandana Guha, MPhil, Martin Howell, PhD, Camilla S. Hanson, PhD, Jonathan C. Craig, PhD, Susan Samuel, MD, Michael Zappitelli, MD, Mina Matsuda-Abedini, MD, Allison Dart, MD, Susan Furth, PhD, Allison Eddy, MD, Jaap Groothoff, PhD, Hui-Kim Yap, MD, Detlef Bockenhauer, PhD, Aditi Sinha, MD, Stephen I. Alexander, PhD, Stuart L. Goldstein, MD, Debbie S. Gipson, MD, Mini Michael, MD, Amanda Walker, MD, Joshua Kausman, PhD, Segolene Gaillard, MD, Justine Bacchetta, MD,
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2021, International Journal of SurgeryCitation Excerpt :If no responses were received after the first two weeks, we sent reminders. The expert panel was asked to rate the importance of each statement in the Delphi survey on a 9-point Likert scale, with 1–3 representing “low importance”, 4–6 representing “not of critical importance” and 7–9 representing “of critical importance” [23]. During the first round, participants of the expert panel could suggest additional risk factors to be incorporated into the second round of the survey after discussion by the research team, as recommended by other Dephi studies [30,31].
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