TY - JOUR
T1 - Patient-Reported Outcomes Over 24 Months in Pediatric CKD
T2 - Findings From the MyKidneyHealth Cohort Study
AU - Amaral, Sandra
AU - Schuchard, Julia
AU - Claes, Donna
AU - Dart, Allison
AU - Greenbaum, Larry A.
AU - Massengill, Susan F.
AU - Atkinson, Meredith A.
AU - Flynn, Joseph T.
AU - Dharnidharka, Vikas R.
AU - Fathallah-Shaykh, Sahar
AU - Yadin, Ora
AU - Modi, Zubin J.
AU - Al-Uzri, Amira
AU - Wilson, Amy C.
AU - Dell, Katherine M.
AU - Patel, Hiren P.
AU - Bruno, Cortney
AU - Warady, Bradley
AU - Furth, Susan
AU - Forrest, Christopher B.
N1 - Funding Information:
Sandra Amaral, MD, MHS, Julia Schuchard, PhD, Donna Claes, MD, MS, Allison Dart, MD, MSc, Larry A. Greenbaum, MD, PhD, Susan F. Massengill, MD, Meredith A. Atkinson, MD, MHS, Joseph T. Flynn, MD, MS, Vikas R. Dharnidharka, MD, MPH, Sahar Fathallah-Shaykh, MD, Ora Yadin, MD, Zubin J. Modi, MD, MS, Amira Al-Uzri, MD, MCR, Amy C. Wilson, MD, Katherine M. Dell, MD, Hiren P. Patel, MD, Cortney Bruno, MSW, Bradley Warady, MD, Susan Furth, MD, PhD, and Christopher B. Forrest, MD, PhD. Research idea and study design: SA, BW, CF, SF; data acquisition: SA, JS, DC, AD, LG, SM, MA, JF, VD, SFS, OY, ZM, AAU, AW, KD, HP, CB, BW, SF, CF; data analysis/interpretation: SA, JS, SF, CF. Each author contributed important intellectual content to manuscript drafts or revisions, approved the submitted version of the manuscript and agrees to be personally accountable for the individual's own contributions and to ensure that questions pertaining to the accuracy or integrity of any portion of the work, even one in which the author was not directly involved, are appropriately investigated and resolved, including with documentation in the literature if appropriate. This work was supported by the National Institutes of Health PEPR Consortium: Advancing the Science of Patient Reported Outcomes in Children with Chronic Illness (Award number, NIAMS U19_AR069525). Clinical data in this manuscript were collected by the Chronic Kidney Disease in Children prospective cohort study (CKiD) with clinical coordinating centers (Principal Investigators) at Children's Mercy Hospital and the University of Missouri, Kansas City (Dr Warady) and Children's Hospital of Philadelphia (Dr Furth), Central Biochemistry Laboratory (George Schwartz, MD) at the University of Rochester Medical Center, and data coordinating center (Alvaro Muñoz, PhD, and Derek Ng, PhD) at the Johns Hopkins Bloomberg School of Public Health. The CKiD Study is supported by grants from the National Institute of Diabetes and Digestive and Kidney Diseases, with additional funding from the Eunice Kennedy Shriver National Institute of Child Health and Human Development, and the National Heart, Lung, and Blood Institute (U01-DK-66143, U01-DK-66174, U24DK-082194, U24-DK-66116). The CKiD website is located at https://statepi.jhsph.edu/ckid/. Funders did not play a role in study design, data collection, analysis, reporting or the decision to submit for publication. The authors declare that they have no relevant financial interests. Special thanks to our patient and parent participants and to the CKiD research coordinators without whom the study would not have been possible. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. Received May 5, 2022. Evaluated by 2 external peer reviewers, with direct editorial input from a Statistics/Methods Editor, an Associate Editor, and a Deputy Editor who served as Acting Editor-in-Chief. Accepted in revised form December 24, 2022. The involvement of an Acting Editor-in-Chief was to comply with AJKD's procedures for potential conflicts of interest for editors, described in the Information for Authors & Journal Policies.
Funding Information:
This work was supported by the National Institutes of Health PEPR Consortium: Advancing the Science of Patient Reported Outcomes in Children with Chronic Illness (Award number, NIAMS U19_AR069525). Clinical data in this manuscript were collected by the Chronic Kidney Disease in Children prospective cohort study (CKiD) with clinical coordinating centers (Principal Investigators) at Children’s Mercy Hospital and the University of Missouri, Kansas City (Dr Warady) and Children’s Hospital of Philadelphia (Dr Furth), Central Biochemistry Laboratory (George Schwartz, MD) at the University of Rochester Medical Center, and data coordinating center (Alvaro Muñoz, PhD, and Derek Ng, PhD) at the Johns Hopkins Bloomberg School of Public Health. The CKiD Study is supported by grants from the National Institute of Diabetes and Digestive and Kidney Diseases , with additional funding from the Eunice Kennedy Shriver National Institute of Child Health and Human Development , and the National Heart, Lung, and Blood Institute ( U01-DK-66143 , U01-DK-66174 , U24DK-082194 , U24-DK-66116 ). The CKiD website is located at https://statepi.jhsph.edu/ckid/ . Funders did not play a role in study design, data collection, analysis, reporting or the decision to submit for publication.
Publisher Copyright:
© 2023 National Kidney Foundation, Inc.
PY - 2023/8
Y1 - 2023/8
N2 - Rationale & Objective: The lived experience of children with chronic kidney disease (CKD) is poorly characterized. We examined the associations between patient-reported outcome (PRO) scores measuring their fatigue, sleep health, psychological distress, family relationships, and global health with clinical outcomes over time in children, adolescents, and younger adults with CKD and investigated how the PRO scores of this group compare with those of other children, adolescents, and younger adults. Study Design: Prospective cohort study. Setting & Participants: 212 children, adolescentss, and adults aged 8 to 21 years with CKD and their parents recruited from 16 nephrology programs across North America. Predictors: CKD stage, disease etiology, and sociodemographic and clinical variables. Outcome: PRO scores over 2 years. Analytical Approach: We compared PRO scores in the CKD sample with a nationally representative general pediatric population (ages 8 to 17 years). Change of PROs over time and association of sociodemographic and clinical variables with PROs were assessed using multivariable regression models. Results: For all time points, 84% of the parents and 77% of the children, adolescents, and younger adults completed PRO surveys. The baseline PRO scores for the participants with CKD revealed a higher burden of fatigue, sleep-related impairment, psychological distress, impaired global health, and poorer family relationships compared with the general pediatric population, with median score differences ≥1 SD for fatigue and global health. The baseline PRO scores did not differ by CKD stage or glomerular versus nonglomerular etiology. Over 2 years, PROs were stable with a <1-point annual change on average on each measure and intraclass correlation coefficients ranging from 0.53 to 0.79, indicating high stability. Hospitalization and parent-reported sleep problems were associated with worse fatigue, psychological health, and global health scores (all P < 0.04). Limitations: We were unable to assess responsiveness to change with dialysis or transplant. Conclusions: Children with CKD experience a high yet stable burden of impairment across numerous PRO measures, especially fatigue and global health, independent of disease severity. These findings underscore the importance of assessing PROs, including fatigue and sleep measures, in this vulnerable population. Plain-Language Summary: Children with chronic kidney disease (CKD) have many treatment demands and experience many systemic effects. How CKD impacts the daily life of a child is poorly understood. We surveyed 212 children, adolescents, and younger adults with CKD and their parents over 24 months to assess the participants’ well-being over time. Among children, adolescents, and younger adults with CKD we found a very high and persistent burden of psychological distress that did not differ by degree of CKD or type of kidney disease. The participants with CKD endorsed greater impairment in fatigue and global health compared with healthy children, adolescents, and younger adults, and parent-reported sleep problems were associated with poorer patient-reported outcome (PRO) scores across all domains. These findings emphasize the importance of including PRO measures, including fatigue and sleep measures, into routine clinical care to optimize the lived experience of children with CKD.
AB - Rationale & Objective: The lived experience of children with chronic kidney disease (CKD) is poorly characterized. We examined the associations between patient-reported outcome (PRO) scores measuring their fatigue, sleep health, psychological distress, family relationships, and global health with clinical outcomes over time in children, adolescents, and younger adults with CKD and investigated how the PRO scores of this group compare with those of other children, adolescents, and younger adults. Study Design: Prospective cohort study. Setting & Participants: 212 children, adolescentss, and adults aged 8 to 21 years with CKD and their parents recruited from 16 nephrology programs across North America. Predictors: CKD stage, disease etiology, and sociodemographic and clinical variables. Outcome: PRO scores over 2 years. Analytical Approach: We compared PRO scores in the CKD sample with a nationally representative general pediatric population (ages 8 to 17 years). Change of PROs over time and association of sociodemographic and clinical variables with PROs were assessed using multivariable regression models. Results: For all time points, 84% of the parents and 77% of the children, adolescents, and younger adults completed PRO surveys. The baseline PRO scores for the participants with CKD revealed a higher burden of fatigue, sleep-related impairment, psychological distress, impaired global health, and poorer family relationships compared with the general pediatric population, with median score differences ≥1 SD for fatigue and global health. The baseline PRO scores did not differ by CKD stage or glomerular versus nonglomerular etiology. Over 2 years, PROs were stable with a <1-point annual change on average on each measure and intraclass correlation coefficients ranging from 0.53 to 0.79, indicating high stability. Hospitalization and parent-reported sleep problems were associated with worse fatigue, psychological health, and global health scores (all P < 0.04). Limitations: We were unable to assess responsiveness to change with dialysis or transplant. Conclusions: Children with CKD experience a high yet stable burden of impairment across numerous PRO measures, especially fatigue and global health, independent of disease severity. These findings underscore the importance of assessing PROs, including fatigue and sleep measures, in this vulnerable population. Plain-Language Summary: Children with chronic kidney disease (CKD) have many treatment demands and experience many systemic effects. How CKD impacts the daily life of a child is poorly understood. We surveyed 212 children, adolescents, and younger adults with CKD and their parents over 24 months to assess the participants’ well-being over time. Among children, adolescents, and younger adults with CKD we found a very high and persistent burden of psychological distress that did not differ by degree of CKD or type of kidney disease. The participants with CKD endorsed greater impairment in fatigue and global health compared with healthy children, adolescents, and younger adults, and parent-reported sleep problems were associated with poorer patient-reported outcome (PRO) scores across all domains. These findings emphasize the importance of including PRO measures, including fatigue and sleep measures, into routine clinical care to optimize the lived experience of children with CKD.
KW - Chronic kidney disease
KW - fatigue
KW - patient-reported outcomes
KW - pediatric
KW - sleep
UR - http://www.scopus.com/inward/record.url?scp=85159117943&partnerID=8YFLogxK
U2 - 10.1053/j.ajkd.2022.12.014
DO - 10.1053/j.ajkd.2022.12.014
M3 - Article
C2 - 36889426
AN - SCOPUS:85159117943
SN - 0272-6386
VL - 82
SP - 213-224.e1
JO - American Journal of Kidney Diseases
JF - American Journal of Kidney Diseases
IS - 2
ER -