Ellison Jonathan S, Flynn Kathryn E, Sheridan Katherine, Siodlarz Samantha, Antonelli Jodi, Bayne Christopher E, Beck Hunter, Ching Christina, Dangle Pankaj P, Dauw Casey, Davis Carley, Hollander Kim, Lange Dirk, Ouimet Kristi, Ouimet Carswell, Pan Amy Y, Penniston Kristina, Scales Charles D, Shah Nayan, Spiardi Ryan, Streeper Necole, Whitmore Kristin, Witt Mike, Zhang Liyun, Tasian Gregory E
Department of Urology, Medical College of Wisconsin, Milwaukee, Wisconsin.
Department of Medicine, Medical College of Wisconsin, Milwaukee, Wisconsin.
J Urol. 2025 Jan;213(1):80-89. doi: 10.1097/JU.0000000000004242. Epub 2024 Sep 20.
To ensure that research on kidney stones provides meaningful impact for the kidney stone community, patients and caregivers should be engaged as stakeholders in clinical trial design, starting at study inception. This project aimed to elicit, refine, and prioritize research ideas from kidney stone stakeholders to develop a patient-centered research agenda for clinical trials.
The Kidney Stone Engagement Core, a group of patients, caregivers, advocates, clinicians, and researchers, executed an iterative process of surveys and focus groups to elicit and refine research themes, which were then translated into research questions. A separate group of patients, caregivers, and clinicians prioritized these questions through parallel modified Delphi and crowdsourced digital platforms. A research agenda was developed by the Kidney Stone Engagement Core based on the highest rated questions during a hybrid virtual/in-person capstone session.
A total of 70 individuals (57 patients and caregivers, 13 researchers and clinicians) participated in the elicitation, 20 individuals (15 patients and caregivers, 5 researchers and clinicians) participated in refinement, and an additional 80 individuals (81 patients and caregivers, 9 researchers and clinicians) participated in prioritization. Key novel themes emerged from elicitation and refinement: ureteral stents, genetic evaluation, shared surgical decision-making, key subgroups, cumulative disease burden, genetic evaluation, and psychosocial support. Stakeholders generated 6 proposed trials from these themes focused on surveillance, surgical intervention, and medical prevention.
Patients and caregivers valued comparative effectiveness kidney stone research that focused on individualized care, shared decision-making, and improvement of patient-reported experiences. This process provided actionable recommendations for future patient-centered clinical trials within kidney stone disease.
