ASN's Mission

To create a world without kidney diseases, the ASN Alliance for Kidney Health elevates care by educating and informing, driving breakthroughs and innovation, and advocating for policies that create transformative changes in kidney medicine throughout the world.

learn more

Contact ASN

1401 H St, NW, Ste 900, Washington, DC 20005

email@asn-online.org

202-640-4660

The Latest on Twitter

Kidney Week

Abstract: SA-PO947

Participant Experience in the Kidney Precision Medicine Project

Session Information

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