To query a broad group of stakeholders for feedback on a patient prioritized research agenda for kidney stone disease and assess stakeholder perceptions of community engagement opportunities for kidney stone disease.
We surveyed stakeholders who previously engaged in a broad-reaching effort to develop a patient-prioritized research agenda, inquiring as to the relevance of the final research agenda. Importance was rated for each agenda item on a scale of 1 (least important) to 9 (of critical importance). Surveys were administered electronically.
Of the 68 / 162 (42%) returned and fully completed surveys, five of the six agenda items met or exceeded median importance values of seven, demonstrating that they were of critical importance to a majority of stakeholders. Overall, only 33% and 22% of patients and caregivers reported ease in finding educational resources and support groups for kidney stone disease.
A patient-prioritized research agenda for kidney stone disease reflects important topics to most stakeholders, including patients and caregivers. Opportunities to further engage kidney stone community members are needed and include ready access to support groups and educational materials.
Urology. 2025 Sep 22 [Epub ahead of print]
Drew Price, Gregory Taisan, Katherine Sheridan, Samantha Jacklin, Casey Dauw, Charles Scales, Ruth Beck, Hunter Beck, Chris Zellers, Kate Zellers, Kim Hollander, Necole Streeper, Jonathan S Ellison
Department of Urology, Medical College of Wisconsin, 8701 W Watertown Plank Rd, Milwaukee, WI 53226, USA. Electronic address: ., Department of Surgery, Division of Urology, The Children's Hospital of Philadelphia, 3401 Civic Center Blvd, Philadelphia, PA 19104, USA Department of Biostatistics, Epidemiology, and Informatics; Perelman School of Medicine at the University of Pennsylvania, 3400 Civic Center Blvd, Philadelphia, PA 19104, USA. Electronic address: ., Department of Urology, Medical College of Wisconsin, 8701 W Watertown Plank Rd, Milwaukee, WI 53226, USA. Electronic address: ., Department of Urology, Medical College of Wisconsin, 8701 W Watertown Plank Rd, Milwaukee, WI 53226, USA. Electronic address: ., Department of Urology, University of Michigan Health System, 1500 E Medical Center Dr, Ann Arbor, MI 48109, USA. Electronic address: ., Duke Surgical Center for Outcomes Research, Duke Clinical Research Institute, Duke University School of Medicine, 300 W Morgan St, Durham, NC 27701, USA. Electronic address: ., Kidney Stone Engagement Core, Milwaukee, WI., Oxalosis and Hyperoxaluria Foundation, New Hyde, NY., Department of Urology, Medical College of Wisconsin, 8701 W Watertown Plank Rd, Milwaukee, WI 53226, USA. Electronic address: ., Department of Urology, Medical College of Wisconsin, 8701 W Watertown Plank Rd, Milwaukee, WI 53226, USA. Electronic address: .