The following is a summary of “A Patient-Prioritized Research Agenda for Clinical Trials in Kidney Stone Disease,” published in the January 2025 issue of Urology by Ellison et al.
Involving patients and caregivers in kidney stone research from the start ensures meaningful impact. Their input in trial design is essential for relevant outcomes.
Researchers conducted a retrospective study to prioritize research ideas from kidney stone stakeholders and create a patient-centered clinical trial agenda.
They conducted surveys and focus groups with patients, caregivers, advocates, clinicians, and researchers to refine research themes into questions. A separate group prioritized these questions using modified Delphi and crowdsourced platforms. A research agenda was created based on the highest-rated questions during a hybrid capstone session.
The results showed that 70 individuals (57 patients and caregivers, 13 researchers and clinicians) participated in elicitation, 20 individuals (15 patients and caregivers, 5 researchers and clinicians) in refinement, and 80 individuals (81 patients and caregivers, 9 researchers and clinicians) in prioritization. Key themes included ureteral stents, genetic evaluation, shared surgical decision-making, subgroups, cumulative disease burden, and psychosocial support. Stakeholders proposed 6 trials focused on surveillance, surgical intervention, and medical prevention.
Investigators prioritized comparative effectiveness research on individualized care and shared decision-making. This led to actionable recommendations for future patient-centered trials.
Source: auajournals.org/doi/10.1097/JU.0000000000004242
