Abstract: SA-PO947
Participant Experience in the Kidney Precision Medicine Project
Session Information
- CKD: Observational Research and Patient-Oriented Interventions
November 05, 2022 | Location: Exhibit Hall, Orange County Convention Center‚ West Building
Abstract Time: 10:00 AM - 12:00 PM
Category: CKD (Non-Dialysis)
- 2202 CKD (Non-Dialysis): Clinical‚ Outcomes‚ and Trials
Authors
- Victoria Castro, Angela Maria, Yale University School of Medicine, Department of Internal Medicine, New Haven, Connecticut, United States
- Corona Villalobos, Celia Pamela, Johns Hopkins University, School of Medicine, Division of Nephrology, Baltimore, Maryland, United States
- Sarkisova, Natalya, Kidney Research Institute and Division of Nephrology, University of Washington, Seattle, Washington, United States
- Blank, Kristina N., Kidney Research Institute and Division of Nephrology, University of Washington, Seattle, Washington, United States
- Dighe, Ashveena, Kidney Research Institute and Division of Nephrology, University of Washington, Seattle, Washington, United States
- Roberts, Glenda V., Kidney Research Institute and Division of Nephrology, University of Washington, Seattle, Washington, United States
- Xu, Alan Yuesheng, Johns Hopkins University, School of Medicine, Division of Nephrology, Baltimore, Maryland, United States
- Blanc, Victoria, University of Michigan, Ann Arbor, Michigan, United States
- Rose, Michael P., University of Michigan, Ann Arbor, Michigan, United States
- de Boer, Ian H., Kidney Research Institute and Division of Nephrology, University of Washington, Seattle, Washington, United States
- Himmelfarb, Jonathan, Kidney Research Institute and Division of Nephrology, University of Washington, Seattle, Washington, United States
- Tuttle, Katherine R., Kidney Research Institute and Division of Nephrology, University of Washington, Seattle, Washington, United States
Group or Team Name
- KPMP
Background
Optimal participant experience is a foundation of the Kidney Precision Medicine Project (KPMP). This study aimed to identify participants’ motivation to participate in research, comprehension of informed consent, satisfaction with processes, and perception of personal impact.
Methods
Participants with acute kidney injury (AKI) or chronic kidney disease (CKD) enrolled at nine recruitment sites in the United States during 2019-2022 attended a visit 28 days after their KPMP protocol kidney biopsy. At that time, participants were asked to complete a survey about their experience with 48 questions developed in collaboration with an evaluation expert from the Institute of Translational Health Sciences at University of Washington.
Results
A 28-day survey was completed by 70% of 129 participants, 17 enrolled for AKI and 73 for CKD. Median age was 60 (IQR 46-66) years, 46% were women, and 27% identified as Black race. Individuals most commonly joined the KPMP to help future patients (56%), and 97-99% understood the informed consent process and their role in the study. They were asked to rate their anxiety during the biopsy on a graded scale; 4% of participants reported a scale of 10 (maximum) anxiety compared to 29% who reported no anxiety. They also rated the pain of the biopsy on a graded scale with 2% reporting 10 (maximum) while 46% chose a rating of 0 (none). Difficult aspects of their KPMP experience were reported by 8%, mostly related to biosample collection. They also commonly reported positive changes in taking medication, diet, physical activity, and views of kidney disease after receiving their biopsy results.
Conclusion
KPMP participants are motivated to participate primarily by altruism and report positive experiences with informed consent and the impact of the study on their daily lives, despite some anxiety and pain related to the biopsy. The KPMP will improve methodology based on participant feedback and will provide guidance for better clinical research processes more broadly.
Funding
- NIDDK Support