Participant Experience with Protocol Research Kidney Biopsies in the Kidney Precision Medicine Project

Abstract

Background Kidney biopsies are procedures commonly performed in clinical nephrology and are increasingly used in research. In this study, we aimed to evaluate the experiences of participants who underwent research kidney biopsies in the Kidney Precision Medicine Project (KPMP). Methods KPMP research participants with AKI or CKD were enrolled at nine recruitment sites in the United States between September 2019 and January 2023. At 28 days postbiopsy, participants were invited to complete a survey to share their experiences, including motivation to participate in research, comprehension of informed consent, pain and anxiety during and after the biopsy procedure, overall satisfaction with KPMP participation, and effect of the study on their lives. The survey was developed in collaboration with the KPMP Community Engagement Committee and the Institute of Translational Health Sciences at the University of Washington. Results One hundred and eleven participants completed the survey, 23 enrolled for AKI and 88 for CKD. The median age was 61 (interquartile range [IQR], 48–67) years, 43% were women, 28% were Black, and 18% were of Hispanic ethnicity. Survey respondents most commonly joined KPMP to help future patients (59%). The consent form was understood by 99%, and 97% recognized their important role in this study. Pain during the biopsy was reported by 50%, at a median level of 1 (IQR, 0–3) on a 0–10 scale. Anxiety during the biopsy was described by 64% at a median level of 3 (IQR, 1–5) on a 0–10 scale. More than half conveyed that KPMP participation had an effect on their diet, physical activity, and how they think about kidney disease. Conclusions KPMP survey respondents were most commonly motivated to participate in research protocol kidney biopsies by altruism, with excellent understanding of the informed consent process.