What is it about?

From the perspective of two rare kidney disease patients and parents of patients, this article reviews the strengths of the PRO-Kid Quality of Life tool as well as recommendations for improvement.

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Why is it important?

As the number of pediatric clinical trials in chronic kidney disease begins to increase, as does the need for researchers and clinicians to have a tool that can effectively measure quality of life for these patients.

Perspectives

It is clear that earlier diagnosis and treatment of kidney disease, often beginning in childhood, can be positively impactful on sustaining native kidney health, making pediatric clinical trials all the more important. Beyond measuring the safety and efficacy of therapies, it is critical to also understand the impact of the therapy on a child's quality of life. I commend the creators of the PRO-Kid Tool for shaping a tool that can be used for this purpose, and including patients in the process. However, the majority of the patients and caregivers involved in this process were in later stages of CKD at the time. In order to use this tool for clinical studies that include patients earlier in CKD stages, it is important that researchers and drug developers also understand their experiences and quality of life.

Executive Director Lisa Bonebrake
Alport Syndrome Foundation

Read the Original

This page is a summary of: Patient and Caregiver Perspective on PRO-Kid Quality of Life Tool, Clinical Journal of the American Society of Nephrology, June 2024, Wolters Kluwer Health,
DOI: 10.2215/cjn.0000000000000497.
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