Kidney stones are one of the fastest growing health conditions among children, adolescents, and young adults. The rapid increase over a short period of time has resulted in a large number of pediatric patients who require surgery to remove kidney stones with very little information available to guide selection of treatment options. There are three alternative approaches to remove kidney stones: ureteroscopy (an endoscopic outpatient procedure), shockwave lithotripsy (a noninvasive outpatient procedure), or percutaneous nephrolithotomy (a minimally invasive surgery with a short hospital stay). This proposal arises from patients’ expressed need to better understand the effectiveness of different surgical approaches to remove kidney stones, the impact of surgery on their lives, and how long it takes to recover from surgery.
This six-week follow-up study will compare stone clearance (a primary determinant of painful stone passage, emergency department visits, and surgical retreatment) and patients’ experiences after ureteroscopy, shockwave lithotripsy, and percutaneous nephrolithotomy for patients 8 to 21 years of age. Patient experiences include pain interference, anxiety, psychological stress, peer relationships, family relationships, and urinary tract symptoms. The findings from this study will provide information that helps pediatric patients and their caregivers make individualized decisions on selecting the most appropriate surgical treatment option. This study will also identify operative techniques specific to each surgical approach that will enable urologists to improve stone clearance and patients’ experiences for each procedure they perform. Consequently, this project will not only improve shared decision making by pediatric patients, caregivers, and clinicians, it will also have a substantial impact on the delivery of operative care for children with kidney stones regardless of the choice of procedure.
This study will be conducted by Pediatric KIDney Stone (PKIDS) Care Improvement Network, which is a community of patients, caregivers, and clinicians who perform collaborative studies of kidney stones at 15 pediatric healthcare systems in the United States. Accordingly, this research will generate highly useable and generalizable knowledge that can be quickly adopted in PKIDS and other healthcare systems to improve outcomes that are most important to patients.
The PKIDS Patient and Family Partners, a group of pediatric patients who have had kidney stone surgery and their caregivers, will ensure all research is coproduced by patients and caregivers by identifying areas of greatest impact, focusing research efforts where they will do the most good, and promoting adoption of new knowledge. The Patient and Family Partners have selected the proposed patient-reported outcomes and the timing of measurement (within the first week and at week three after surgery). Patient and Family Partners have the authority to revise and approve the study protocol, review all data, and help interpret results before any reports are distributed. Patient and Family Partners will also participate as expert moderators in open discussion forums and video chats hosted on the PKIDS online educational hub, which is the platform through which study findings and materials will be distributed to PKIDS sites, and to patients and clinicians in other health systems.
*All proposed projects, including requested budgets and project periods, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.