Children with CKD experience increased burden of fatigue independent of disease severity
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Regardless of chronic kidney disease stage, children experience high and consistent burden of impairment across many patient-reported measures, according to data published in the American Journal of Kidney Disease.
Of these measures, fatigue and global health stand out as an increased burden among this population.
“Children with CKD experience numerous comorbidities as their CKD progresses, with many treatment demands, including medications, clinic visits and laboratory monitoring,” Sandra Amaral, MD, MHS, from the department of pediatrics at the Children’s Hospital of Philadelphia, and colleagues wrote. They added, “Despite recognition of substantial systemic and symptomatic effects of CKD on the health and well-being of children with CKD, clinical care has been hampered by the absence of efficient, precise and valid tools to assess their daily lived experiences.”
In a prospective cohort study, researchers examined 212 children aged between 8 and 21 years with CKD. Parents were also included in the analysis.
Participants shared patient-reported outcomes for children’s fatigue, sleep health, psychological stress, family relationships and global health over time, which researchers compared with outcomes of the general pediatric population.
With CKD stage, disease etiology, and sociodemographic and clinical variables serving as predictors, researchers considered the PROs during a 2-year period as the outcome of the study. Using multivariable regression models, researchers measured the change in PROs with time and correlations with sociodemographic and clinical variables.
Overall, 84% of the parents completed PROs at all time points during the study, as did 77% of the children. Compared with the general pediatric population, the baseline PRO scores for children with CKD showed increased burden of fatigue, sleep-related impairment, psychological distress, impaired global health and poorer family relationships. Further, the baseline PRO scores did not vary by CKD stage or glomerular vs. non-glomerular etiology.
During the 2-year period, PROs remained stable with a less than one point average annual change on each measure. Additionally, analyses revealed hospitalizations and patient-reported sleep problems correlated with worse fatigue, psychological health and global health scores.
“Our findings highlight the critical need for clinicians and researchers to expand their assessments of patients to include what matters to patients and to use that information to align treatment decisions and goals,” Amaral and colleagues wrote. They concluded, “Future studies are needed to understand the root causes beyond the effects of kidney dysfunction. Overall, PROs offer an opportunity to incorporate assessments of the patient daily lived experience effectively and efficiently into routine clinical care and may be particularly salient for children with CKD.”
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