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Participant Experience with Protocol Research Kidney Biopsies in the Kidney Precision Medicine Project
Angela M Victoria-Castro1, Celia P Corona-Villalobos2, Alan Y Xu2
1Clinical and Translational Research Accelerator, Yale School of Medicine, New Haven, Connecticut.
Clinical Journal of the American Society of Nephrology : CJASN
|October 23, 2023
Summary
Participants in the Kidney Precision Medicine Project (KPMP) research biopsies were primarily motivated by altruism. Most participants understood the informed consent process and found the study impactful.
Area of Science:
- Nephrology
- Clinical Research
- Patient Experience
Background:
- Kidney biopsies are crucial in nephrology and research.
- The Kidney Precision Medicine Project (KPMP) utilizes research kidney biopsies.
- Evaluating participant experiences in KPMP is essential.
Purpose of the Study:
- To assess the experiences of participants undergoing research kidney biopsies in the KPMP.
- To understand participant motivations, comprehension, and outcomes.
Main Methods:
- 111 participants with AKI or CKD in the KPMP completed a post-biopsy survey.
- The survey assessed motivation, informed consent, pain, anxiety, satisfaction, and life impact.
- Data collected from September 2019 to January 2023 across nine US sites.
Main Results:
- Altruism was the primary motivation for 59% of participants.
- 99% understood the informed consent, and 97% recognized their study role.
- 50% reported pain (median 1/10) and 64% anxiety (median 3/10) during biopsy.
- Over half reported impacts on diet, activity, and perception of kidney disease.
Conclusions:
- KPMP participants are largely motivated by a desire to help others.
- The informed consent process in KPMP is well-understood by participants.
- Research kidney biopsies in KPMP have a notable impact on participants' lives.
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