Pd34-01 development of a patient-centered research agenda for kidney stone disease: elicitation and refinement of research themes

You have accessJournal of UrologyCME1 Apr 2023PD34-01 DEVELOPMENT OF A PATIENT-CENTERED RESEARCH AGENDA FOR KIDNEY STONE DISEASE: ELICITATION AND REFINEMENT OF RESEARCH THEMES Jonathan Ellison, Hunter Beck, Bryan Clintsman, Casey Dauw, Kathryn Flynn, Kim Hollander, Dirk Lange, Kristi Ouimet, Carswell Ouimet, Kristina Penniston, Charles Scales, Nayan Shah, Katherine Sheridan, Samantha Siodlarz, Ryan Spiardi, Kristen Whitmore, Mike Witt, and Greg Tasian Jonathan EllisonJonathan Ellison More articles by this author , Hunter BeckHunter Beck More articles by this author , Bryan ClintsmanBryan Clintsman More articles by this author , Casey DauwCasey Dauw More articles by this author , Kathryn FlynnKathryn Flynn More articles by this author , Kim HollanderKim Hollander More articles by this author , Dirk LangeDirk Lange More articles by this author , Kristi OuimetKristi Ouimet More articles by this author , Carswell OuimetCarswell Ouimet More articles by this author , Kristina PennistonKristina Penniston More articles by this author , Charles ScalesCharles Scales More articles by this author , Nayan ShahNayan Shah More articles by this author , Katherine SheridanKatherine Sheridan More articles by this author , Samantha SiodlarzSamantha Siodlarz More articles by this author , Ryan SpiardiRyan Spiardi More articles by this author , Kristen WhitmoreKristen Whitmore More articles by this author , Mike WittMike Witt More articles by this author , and Greg TasianGreg Tasian More articles by this author View All Author Informationhttps://doi.org/10.1097/JU.0000000000003327.01AboutPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookLinked InTwitterEmail Abstract INTRODUCTION AND OBJECTIVE: 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 © 2023 by American Urological Association Education and Research, Inc.FiguresReferencesRelatedDetails Volume 209Issue Supplement 4April 2023Page: e920 Advertisement Copyright & Permissions© 2023 by American Urological Association Education and Research, Inc.MetricsAuthor Information Jonathan Ellison More articles by this author Hunter Beck More articles by this author Bryan Clintsman More articles by this author Casey Dauw More articles by this author Kathryn Flynn More articles by this author Kim Hollander More articles by this author Dirk Lange More articles by this author Kristi Ouimet More articles by this author Carswell Ouimet More articles by this author Kristina Penniston More articles by this author Charles Scales More articles by this author Nayan Shah More articles by this author Katherine Sheridan More articles by this author Samantha Siodlarz More articles by this author Ryan Spiardi More articles by this author Kristen Whitmore More articles by this author Mike Witt More articles by this author Greg Tasian More articles by this author Expand All Advertisement PDF downloadLoading ...