Dissemination of a Patient-Prioritized Research Agenda for Kidney Stone Disease: Patient Perceptions and Opportunities

Abstract

Objective: 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.

Methods: 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.

Results: 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.

Conclusions: 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.