Medical College of Wisconsin & Children's Wisconsin
Introduction: Conducting high-quality comparative effectiveness research for kidney stone disease is resource intensive. Therefore, priority should be given to initiatives with greatest potential to impact patients and their caregivers. Setting research agendas with patient and caregiver engagement can ensure future trials address questions that reflect patient priorities. Methods: We conducted a mixed-methods stakeholder engagement program using web-based surveys and focus groups. We recruited English and Spanish speaking stakeholders aged 12 years and older from Urology clinics and through social media. Self-identified stakeholder groups for kidney stone disease included patients, caregivers, researchers, and clinicians. Survey materials and interview guides were co-created with a core group of patient, caregiver, advocate, clinician, and researcher stakeholders. Focus groups were conducted until thematic saturation was reached. Results from surveys and transcripts of focus groups were reviewed by three reviewers to extract themes for future trials. Results: Survey group participants (n=70) were 80% patients and caregivers; focus group participants (n=20) were 79% patients and caregivers. Participants in both were 64% female. Patient and caregiver stakeholder experiences included: 32 (35%) with stone passage, 29 (32%) with surgery, and 21(23%) with stents. Researchers and clinicians included adult urologists (6), adult nephrologists (2), pediatric urologists (7), and other specialty areas (4). Prevention (28), surgical outcomes (18), and customizing care to key subgroups (10) were the three most common thematic elements from survey responses. A saturation grid from focus group sessions indicating a priori (7) and survey- or focus group-generated themes (6) is shown in the Figure. Thematic saturation was reached after 7 focus groups. Conclusions: By creating a patient-focused kidney stone research agenda, we identified 6 de novo themes. Stakeholder elucidated themes included patient-centered concepts such as vulnerable or underrepresented populations, shared decision-making, and disease burden. Future work will translate identified research themes into research topics for stakeholder-based prioritization. SOURCE OF Funding: Patient Centered Outcomes Research Institute
