Project Summary

Children with chronic kidney disease (CKD) experience symptoms that affect their quality of life, yet clinical tools to assess these symptoms in pediatric care are lacking. To address this gap, the PRO-Kid project team developed a novel symptom assessment tool for children, co-designed with patients and families. The team is evaluating the tool at seven pediatric centres across Canada while developing implementation plans and expanding its use for younger children and French-speaking populations to ensure broader reach and impact. 

Why This Work Matters

Children with CKD often face fatigue, pain, and other symptoms that are hard to measure and easy to overlook. Co-designed with children and families and validated nationally, PRO-Kid gives young patients a voice in their care. It helps health teams track and respond to symptoms in real time, improving quality of life. Now being evaluated at pediatric sites across Canada, PRO-Kid is poised to transform care by centering what matters most to patients: feeling heard, understood, and supported. 

Project Objectives

• Validate PRO-Kid across Canadian sites to ensure it effectively captures the most burdensome CKD symptoms experienced by children and adolescents.  

• Support implementation planning through readiness surveys and focus groups with multidisciplinary clinic teams at seven pediatric nephrology sites across Canada. 

• Engage stakeholders and patient partners to co-develop clinic-level workflows and resources that integrate PRO-Kid into routine care.  

• Develop and validate new modules to expand PRO-Kid for younger children (ages 2–7) and French-speaking populations. 

• Optimize national scale-up strategies for wider adoption of PRO-Kid by evaluating site-specific barriers, supports, and sustainability factors. 

Recent Activities & Progress

• Completed national validation of PRO-Kid, confirming its reliability and responsiveness to symptom change. 

• Launched focus groups and readiness surveys at seven sites to assess clinic needs and develop implementation supports. 

• Co-designed implementation resources with input from clinicians, administrators, and families, including proposed clinical workflows. 

• Initiated development of adapted tools for use with younger children and French-speaking patients. 

• Engaged in knowledge mobilization activities, including workshops and presentations to the Pediatric Nephrology community and Can-SOLVE CKD Network.