Mind, Emotions, and Quality of Life in Children with Chronic Kidney Disease

 This content is based on the review article "Overview of the findings and advances in the neurocognitive and psychosocial functioning of mild to moderate pediatric CKD: perspectives from the Chronic Kidney Disease in Children (CKiD) cohort study", published in 2021 in the journal Pediatric Nephrology. The article was authored by a team led by Professor Stephen R. Hooper (University of North Carolina School of Medicine) and includes leading experts in pediatric nephrology, psychology, epidemiology, and clinical research from top U.S. medical institutions such as Johns Hopkins School of Medicine, University of Rochester, Children’s Mercy Kansas City, Albert Einstein College of Medicine, University of Iowa, among others.

The publication summarizes findings from the large-scale, long-term CKiD cohort study, which has been tracking the development, cognitive, emotional, and social functioning of children with mild to moderate chronic kidney disease (CKD) for over 17 years across more than 50 clinical centers in the U.S. and Canada. The following questions and answers are drawn directly from the data and analysis in this publication, with the goal of being as helpful as possible to patients, parents, and caregivers.

“Most children with mild to moderate chronic kidney disease retain their cognitive and social skills, and severe impairments are rare.”

Expert Insights

In recent years, the scientific community has been paying increasing attention to the relationship between chronic illnesses in childhood and children's cognitive, emotional, and social development. One of the most comprehensive and long-running studies in this field is the CKiD (Chronic Kidney Disease in Children) cohort study, which provides invaluable, in-depth insights into the experiences of children with mild to moderate CKD. The results are relevant not only to medical professionals but also to patients and their families who seek up-to-date, evidence-based answers about the future and quality of life of children with CKD.

Below are five of the most important expert findings and scientific conclusions from the publication, presented under guiding titles/questions with explanatory notes designed to help patients and their loved ones make informed decisions and better understand the disease.

1. How severe are cognitive difficulties in children with chronic kidney disease?

“While the cognitive functioning of this sample of 368 children aged 6 to 16 years was within the average range, approximately 21% to 40% of participants were considered at risk (i.e., >1 standard deviation below the test average) for cognitive impairments, as measured by assessments of intelligence, attention, executive function, and overall academic achievement.”

Explanation: Most children with mild to moderate CKD do not develop severe cognitive impairments, but up to 40% are at risk for more subtle issues—mainly in attention, executive function, and IQ. Early and regular monitoring is essential, as timely identification and intervention can reduce the impact on learning and development.

2. What medical factors increase the risk of cognitive and behavioral difficulties?

“Longer CKD duration is associated with poorer attention and related executive dysfunction. Higher blood pressure and significant variability in systolic pressure between visits are linked to lower nonverbal IQ and weaker verbal set-shifting skills…”

Explanation: Children with longer CKD duration, poorly controlled or fluctuating blood pressure, anemia, proteinuria, or even minimal blood lead levels are more vulnerable to cognitive challenges. This highlights the importance of a comprehensive treatment approach—not just kidney function control but also tight monitoring of blood pressure, anemia, and environmental factors.

3. What are the most common emotional and behavioral issues in these children?

“About 5% of children report elevated symptoms of depression, and another 2% are receiving treatment for depression. Although these rates are relatively low, depressive symptoms are linked to lower IQ, reduced academic performance, and lower quality of life ratings.”

Explanation: Most children with CKD do not face severe psychiatric challenges, but the risk of depression and behavioral issues (especially attention-related) is higher compared to their healthy peers. Emotional well-being has a direct effect on learning and overall quality of life, making routine screening and, when needed, consultation with a psychologist or psychiatrist, highly recommended.

4. How is quality of life affected in children with chronic kidney disease?

“Parent and child ratings of quality of life in physical, school, social, and emotional domains were significantly lower compared to healthy children, even after controlling for demographic and medical factors… Better outcomes were observed in children with longer disease duration, possibly due to better adaptation and resilience development.”

Explanation: While the quality of life in children with CKD is below average, most children and families gradually adapt and build resilience over time. More severe CKD, anemia, multiple medications, and high blood pressure are associated with lower quality of life, while living longer with the disease often correlates with better coping and adjustment.

5. What do experts recommend for optimal care and monitoring of children with CKD?

“Our results suggest… it remains important to include regular, systematic monitoring of neurocognitive and psychosocial functioning as part of standard care. This does not always require full evaluations, but rather routine screening for these concerns as part of regular medical visits… These subtle differences must be identified and appropriately managed as part of the child’s healthcare.”

Explanation: Ongoing monitoring of cognitive, emotional, and social functioning should become a routine standard of care to detect at-risk children early. A more in-depth assessment is recommended at least once every two years, especially when early signs of difficulty emerge. Treatment should be multidisciplinary, involving a nephrologist, psychologist, educator, and social worker when needed.

Questions and Answers

1. Will my child’s brain function worsen over time if the disease progresses? 

Answer: Data from the CKiD study show that in children with mild to moderate CKD, there is no significant decline in cognitive abilities even as the disease progresses—at least not until the later stages (such as requiring a kidney transplant or dialysis). Children retain their core skills, and there is no sharp drop in IQ or academic performance during the 8-year observation period.

“No significant long-term cognitive impairments were identified; no decline in cognitive function was observed over at least an 8-year period.”

2. How do children with chronic kidney disease differ from their healthy peers? 

Answer: Compared to healthy children, those with CKD are more likely to have difficulties with attention, executive functions, and lower math achievement, as well as lower ratings in physical, emotional, social, and school-related quality of life. However, most do not have severe impairments—rather, they show more subtle differences and higher vulnerability.

“Children with CKD perform significantly worse in physical, academic, social, and emotional domains compared to healthy peers… About one-third show lower academic achievement, especially in math.”

3. Can CKD cause brain problems or even stroke in children? 

Answer: Yes, although rarely. A small number of children with CKD show changes in the brain's white matter (visible via MRI), and the risk of ischemic stroke is slightly higher compared to healthy children. When stroke occurs, it is associated with significantly lower cognitive functioning.

“MRI reveals localized and multifocal white matter abnormalities in some children… Ischemic stroke is linked to a significant decrease in all cognitive functions.”

4. Does the treatment approach or number of medications affect my child’s quality of life? 

Answer: Yes. The number of medications impacts quality of life, especially in younger children—the more medications taken, the lower the quality of life ratings reported by parents.

“Parental ratings of quality of life in younger children are higher, but drop significantly with increasing medication burden, especially compared to older children.”

5. Can genetic or environmental factors increase developmental risks in children with CKD? 

Answer: Yes. About 8% of children with CKD have genetic syndromes that may heighten the risk of cognitive and kidney-related problems. Additionally, even low levels of lead in the blood are linked to lower IQ and attention issues. This underscores the importance of early genetic diagnosis and monitoring environmental risk factors.

“Children with CKD and genomic disorders are more prone to neurocognitive impairments… Even minimal amounts of lead in the blood are linked to lower IQ and increased inattentiveness.”

Conclusion

The findings of the CKiD cohort study, summarized by Professor Stephen R. Hooper and colleagues, present a more nuanced and optimistic view of children with mild to moderate chronic kidney disease. While there are certain risks related to cognitive, emotional, and social functioning, most children maintain their core abilities, and severe impairments are the exception rather than the rule. Early detection, comprehensive medical care, and support from families and professionals remain key to ensuring a good quality of life. The CKiD data empower parents and patients to make informed decisions that can improve not only health outcomes but also the everyday well-being of children with CKD.

Source: Hooper SR, Johnson RJ et al., Overview of the findings and advances in the neurocognitive and psychosocial functioning of mild to moderate pediatric CKD: perspectives from the CKiD cohort study, Pediatric Nephrology, 2021. https://doi.org/10.1007/s00467-021-05158-w