학술논문
Participant Experience with Protocol Research Kidney Biopsies in the Kidney Precision Medicine Project
Document Type
Academic Journal
Author
Victoria-Castro, Angela M.; Corona-Villalobos, Celia P.; Xu, Alan Y.; Onul, Ingrid; Huynh, Courtney; Chen, Sarah W.; Ugwuowo, Ugochukwu; Sarkisova, Natalya; Dighe, Ashveena L.; Blank, Kristina N.; Blanc, Victoria M.; Rose, Michael P.; Himmelfarb, Jonathan; de Boer, Ian H.; Tuttle, Katherine R.; Roberts, Glenda V.; Alexandrov, Theodore; Alloway, Rita R.; Alpers, Charles E.; Amodu, Afolarin A.; Anderton, Christopher R.; Anjani, Kavya; Appelbaum, Paul; Ardayfio, Joseph; Arora, Tanima; Ascani, Heather; El-Achkar, Tarek M.; Aulisio, Mark; Azeloglu, Evren U.; Balderes, Olivia; Balis, Ulysses G.J.; Bansal, Shweta; Barasch, Jonathan M.; Bansal, Shweta; Barkell, Alex; Barwinska, Daria; Basit, Mujeeb; Basta, Jeanine; Bebiak, Jack; Beck, Laurence H.; Bender, Filitsa; Berglund, Ashley; Bernard, Lauren; Berrouet, Cecilia; Berry, Brooke; Bjornstad, Petter M.; Blanc, Victoria M.; Blank, Kristina N.; Bledsoe, Sharon; Boada, Patrick; Bogen, Steve; Bomback, Andrew S.; Bonevich, Nikole; Borner, Katy; Brown, Keith; Bueckle, Andreas; Burg, Ashley R.; Burgess, Adam; Bush, Lakeshia; Bush, William S.; Campbell, Catherine E.; Campbell, Taneisha; Canetta, Pietro A.; Cantley, Lloyd G.; Caprioli, Richard M.; Carson, Jonas; Chen, Sarah; Chen, Yijiang M.; Cheng, Yinghua; Cimino, Jim; Colona, Mia R.; Conser, Ninive C.; Cooperman, Leslie; Crawford, Dana C.; DʼAgati, Vivette D.; Dagher, Pierre C.; Daniel, Stephen; Daratha, Kenn; de Boer, Ian H.; Diettman, Sabine M.; Dighe, Ashveena L.; Donohoe, Isabel; Dowd, Frederick; Dunn, Kenneth W.; Eadon, Michael T.; Eddy, Sean; Elder, Michele M.; Ferkowicz, Michael J.; Frey, Renee; Gadegbeku, Crystal A.; Gaut, Joseph P.; Gilliam, Matthew; Ginley, Brandon; Gisch, Debora; Goltsev, Yury; Gonzalez-Vicente, Agustin; Greka, Anna; Grewenow, Stephanie M.; Hacohen, Nir; Hall, Daniel E.; Hansen, Jens; Hayashi, Lynda; He, Cijang; He, Yougqun; Hedayati, S. Susan; Henderson, Joel M.; Hendricks, Allen H.; Herlitz, Leal; Herr, Bruce W.; Himmelfarb, Jonathan; Hodgin, Jeffrey B.; Hoofnagle, Andrew N.; Hoover, Paul J.; Ilori, Titlayo; Iyengar, Ravi; Jain, Sanjay; Jain, Yashvardhan; Janowczyk, Andrew; Jefferson, Nichole; Johansen, Camille; Jolly, Stacey; Kakade, Vijaykumar R.; Kellum, John A.; Kelly, Katherine J.; Kermani, Asra; Kiryluk, Krzysztof; Knight, Richard; Koewler, Robert; Kretzler, Matthias; Kudose, Satoru; Lake, Blue B.; Larson, Brandon; Laszik, Zoltan G.; Lecker, Stewart H.; Lee, Paul J.; Lee, Simon C.; Lienczewski, Chrysta; Limonte, Christine; Lu, Christopher Y.; Lucarelli, Nicholas; Lukowski, Jessica; Luo, Jinghui; Lutnick, Brendon; Ma, Shihong; Madabhushi, Anant; Madhavan, Sethu M.; Maikhor, Shana; Mariani, Laura H.; Marshall, Jamie L.; McClelland, Robyn L.; McMahon, Gearoid M.; Mehl, Karla; Ferreira, Ricardo Melo; Menez, Steven; Menon, Rajasree; Miller, R. Tyler; Moe, Orson W.; Moledina, Dennis; Montellano, Richard; Mooney, Sean D.; Morales, Martha Catalina; Mukatash, Tariq; Murugan, Raghavan; Nam, Yunbi; Nguyen, Jane; Nolan, Garry; Oʼtoole, John; Oliver, George (Holt); Onul, Ingrid; Otto, Edgar; Palevsky, Paul M.; Palmer, Ellen; Pamreddy, Annapurna; Parikh, Chirag R.; Parikh, Samir; Park, Christopher; Park, Harold; Pasa-Tolic, Ljiljana; Patel, Jiten; Patterson, Nathan; Phuong, Jim; Pillai, Anil; Pinkeney, Roy; Poggio, Emilio; Pollack, Ari; Prasad, Pottumarthi; Pyle, Laura; Quardokus, Ellen M.; Randhawa, Parmjeet; Rauchman, Michael I.; Record, Elizabeth; Rennke, Helmut; Rezaei, Kasra; Rike, Adele; Rivera, Marcelino; Roberts, Glenda V.; Rosas, Sylvia E.; Rosenberg, Avi; Rosengart, Matthew; Rovin, Brad; Roy, Neil; Sabatello, Maya; Sambandam, Kamalanathan; Sarder, Pinaki; Sarkisova, Natalya; Sarwal, Minnie; Saul, John; Schaub, Jennifer; Schmidt, Insa; Sealfon, Rachel; Sedor, John; Sendrey, Dianna; Shang, Ning; Shankland, Stuart; Shapiro, John P.; Sharma, Kumar; Sharman, Kavya; Shaw, Melissa M.; Shi, Tiffany; Shpigel, Anna; Sigdel, Tara; Slade, Austen; Snyder, Jamie; Spates-Harden, Kassandra; Spraggins, Jeffrey M.; Srivastava, Anand; Steck, Becky; Stillman, Isaac; Stutzke, Christy; Su, Jing; Sun, Jennifer; Sutton, Timothy A.; Taliercio, Jonathan; Tan, Roderick; Torrealba, Jose; Toto, Robert D.; Troyanskaya, Olga; Tublin, Mitchell; Tuttle, Katherine R.; Ugwuowo, Ugochukwu; Valerius, M. Todd; Van de Plas, Raf; Varela, German; Vazquez, Miguel; Velickovic, Dusan; Venkatachalam, Manjeri; Verma, Ashish; Victoria-Castro, Angela M.; Vijayan, Anitha; Corona-Villalobos, Celia P.; Vinovskis, Carissa; Viswanathan, Vidya S.; Vita, Tina; Waikar, Sushrut; Wang, Ashley; Wang, Ruikang; Wang, Nancy; Weins, Astrid; Wen, Natasha; Wen, Yumeng; Wilcox, Adam; Williams, James C., Jr.; Kayleen Williams; Williams, Mark; Wilson, Francis P.; Winfree, Seth; Winters, James; Wofford, Stephanie; Wong, Aaron; Woodle, E. Steve; Xiong, Yuguang; Xu, Alan; Yadati, Pranav; Ye, Hongping; Yu, Guanghao; Zhang, Dianbo; Zhang, Guanshi; Zhang, Kun
Source
Clinical Journal of the American Society of Nephrology. Feb 01, 2024 19(2):202-212
Subject
Language
English
ISSN
1555-9041
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. PODCAST: This article contains a podcast at https://dts.podtrac.com/redirect.mp3/www.asn-online.org/media/podcast/CJASN/2023_11_20_CJN0000000000000334.mp3This article contains a podcast at https://dts.podtrac.com/redirect.mp3/www.asn-online.org/media/podcast/CJASN/2023_11_20_Spanish_CJN00000000.mp3