A new study by Sandra Amaral and team found that independent of the severity of the disease, children with chronic kidney disease (CKD) have significant but steady burden of impairment across several patient-reported outcomes (PROs) measures, including tiredness and global health.
The findings of this study were published in the American Journal of Kidney Diseases.
Children with chronic renal illness have a poorly understood lived experience. In order to determine how clinical outcomes in children with CKD compare to those in other children, researchers looked at the relationships between patient-reported outcomes (PROs) measuring children’s fatigue, psychological distress, family relationships, sleep health, and overall health and clinical outcomes over time.
A total of 212 CKD-affected children aged 8 to 21 and their parents were enrolled in this prospective cohort trial, which was conducted throughout 16 nephrology programs in North America. The key predictors in this study were CKD stage, sociodemographic characteristics, illness etiology, and clinical factors. For a period of two years, the outcomes were evaluated. To do this, researchers compared PROs in the CKD group with a general pediatric population that was considered to be nationally representative. Using multivariable regression models, it was determined how PROs changed over time and how sociodemographic and clinical factors were related to PROs.
The key findings of this study were:
1. During all times, 84% of parents and 77% of kids completed PROs.
2. In comparison to the general pediatric population, children with CKD had baseline PRO scores that showed higher burdens of fatigue, psychological distress, impaired global health, sleep-related impairment, and poorer family relationships, with median score differences for fatigue and global health being one standard deviation.
3. By stage of CKD or between glomerular and non-glomerular etiologies, baseline PRO scores did not vary.
4. Over the course of two years, PROs exhibited great stability, with an average yearly change on each measure of less than one point and intraclass correlation coefficients ranging from 0.53 to 0.79.
5. Worse ratings for exhaustion, psychological health, and overall health were connected with hospitalization and parent-reported sleep issues.
Amaral, S., Schuchard, J., Claes, D., Dart, A., Greenbaum, L. A., Massengill, S. F., Atkinson, M. A., Flynn, J. T., Dharnidharka, V. R., Fathallah-Shaykh, S., Yadin, O., Modi, Z. J., Al-Uzri, A., Wilson, A. C., Dell, K. M., Patel, H. P., Bruno, C., Warady, B., Furth, S., & Forrest, C. B. (2023). Patient-Reported Outcomes Over 24 Months in Pediatric CKD: Findings From the MyKidneyHealth Cohort Study. In American Journal of Kidney Diseases. Elsevier BV. https://doi.org/10.1053/j.ajkd.2022.12.014