Patient-prioritized outcomes for pediatric kidney stone surgery: A mixed-methods study

Pediatric kidney stone disease is increasing and frequently requires surgical intervention. Although procedural success is traditionally measured using metrics like stone clearance and complications, little is known about which outcomes pediatric patients and caregivers consider most important. We aimed to identify and prioritize patient-centered outcomes for pediatric kidney stone surgery.

We conducted a stakeholder-engaged mixed methods study involving pediatric patients aged 8-21 years with prior kidney stone surgery and their caregivers. Participants were recruited through a multi-institutional pediatric kidney stone network. Qualitative focus groups were conducted using semi-structured discussion guides and analyzed using a hybrid deductive-inductive thematic approach. Identified themes were subsequently prioritized using structured pairwise comparison on a web-based platform.

Twenty-two participants (14 patients, 8 caregivers) participated in five focus groups, and six of 58 participants invited to the outcome prioritization phase completed the exercise. Nineteen outcome themes were identified. Outcomes extended beyond traditional surgical metrics and included psychosocial, functional, and procedural burden domains. Eight outcomes received greater than 50% agreement during prioritization, including stone clearance (59.5%), additional procedures (58.0%), risk of kidney injury (56.8%), need for tubes or drains (56.1%), return to normal function (53.9%), urinary symptoms (52.7%), pain medication use (50.5%), and pain intensity (50.5%). No single outcome dominated prioritization, with variability in preferences across participants.

Pediatric patients and caregivers prioritize outcomes that extend beyond traditional surgical metrics. These findings suggest the importance of incorporating patient-prioritized outcomes into clinical decision-making and future research to better align treatment evaluation with patient experiences in pediatric kidney stone surgery.