Abstract
Trials in children with chronic kidney disease do not consistently report outcomes that are critically important to patients and caregivers. This can diminish the relevance and reliability of evidence for decision making, limiting the implementation of results into practice and policy. As part of the Standardized Outcomes in Nephrology—Children and Adolescents (SONG-Kids) initiative, we convened 2 consensus workshops in San Diego, California (7 patients, 24 caregivers, 43 health professionals) and Melbourne, Australia (7 patients, 23 caregivers, 49 health professionals). This report summarizes the discussions on the identification and implementation of the SONG-Kids core outcomes set. Four themes were identified; survival and life participation are common high priority goals, capturing the whole child and family, ensuring broad relevance across the patient journey, and requiring feasible and valid measures. Stakeholders supported the inclusion of mortality, infection, life participation, and kidney function as the core outcomes domains for children with chronic kidney disease.
| Original language | English (US) |
|---|---|
| Pages (from-to) | 553-565 |
| Number of pages | 13 |
| Journal | Kidney international |
| Volume | 98 |
| Issue number | 3 |
| DOIs | |
| State | Published - Sep 1 2020 |
Keywords
- children
- chronic kidney disease
- core outcomes set
- dialysis
- outcomes
- patient-centered care
- transplant
- trials
ASJC Scopus subject areas
- Nephrology
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In: Kidney international, Vol. 98, No. 3, 01.09.2020, p. 553-565.
Research output: Contribution to journal › Article › peer-review
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TY - JOUR
T1 - Establishing core outcome domains in pediatric kidney disease
T2 - report of the Standardized Outcomes in Nephrology—Children and Adolescents (SONG-KIDS) consensus workshops
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N1 - Publisher Copyright: © 2020
PY - 2020/9/1
Y1 - 2020/9/1
N2 - Trials in children with chronic kidney disease do not consistently report outcomes that are critically important to patients and caregivers. This can diminish the relevance and reliability of evidence for decision making, limiting the implementation of results into practice and policy. As part of the Standardized Outcomes in Nephrology—Children and Adolescents (SONG-Kids) initiative, we convened 2 consensus workshops in San Diego, California (7 patients, 24 caregivers, 43 health professionals) and Melbourne, Australia (7 patients, 23 caregivers, 49 health professionals). This report summarizes the discussions on the identification and implementation of the SONG-Kids core outcomes set. Four themes were identified; survival and life participation are common high priority goals, capturing the whole child and family, ensuring broad relevance across the patient journey, and requiring feasible and valid measures. Stakeholders supported the inclusion of mortality, infection, life participation, and kidney function as the core outcomes domains for children with chronic kidney disease.
AB - Trials in children with chronic kidney disease do not consistently report outcomes that are critically important to patients and caregivers. This can diminish the relevance and reliability of evidence for decision making, limiting the implementation of results into practice and policy. As part of the Standardized Outcomes in Nephrology—Children and Adolescents (SONG-Kids) initiative, we convened 2 consensus workshops in San Diego, California (7 patients, 24 caregivers, 43 health professionals) and Melbourne, Australia (7 patients, 23 caregivers, 49 health professionals). This report summarizes the discussions on the identification and implementation of the SONG-Kids core outcomes set. Four themes were identified; survival and life participation are common high priority goals, capturing the whole child and family, ensuring broad relevance across the patient journey, and requiring feasible and valid measures. Stakeholders supported the inclusion of mortality, infection, life participation, and kidney function as the core outcomes domains for children with chronic kidney disease.
KW - children
KW - chronic kidney disease
KW - core outcomes set
KW - dialysis
KW - outcomes
KW - patient-centered care
KW - transplant
KW - trials
UR - http://www.scopus.com/inward/record.url?scp=85088934417&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85088934417&partnerID=8YFLogxK
U2 - 10.1016/j.kint.2020.05.054
DO - 10.1016/j.kint.2020.05.054
M3 - Article
C2 - 32628942
AN - SCOPUS:85088934417
SN - 0085-2538
VL - 98
SP - 553
EP - 565
JO - Kidney international
JF - Kidney international
IS - 3
ER -