TY - JOUR
T1 - A Survey of Patient Attitudes Toward Participation in Biopsy-Based Kidney Research
AU - Moledina, Dennis G.
AU - Cheung, Bettina
AU - Kukova, Lidiya
AU - Luciano, Randy L.
AU - Peixoto, Aldo J.
AU - Wilson, F. Perry
AU - Alfano, Sandra
AU - Parikh, Chirag R.
N1 - Funding Information:
We wish to thank the participants of the Yale AIN study, without whom this study would not have been possible. This work was supported by the National Institutes of Health awards K24DK090203 (CRP), K23DK097201 (FPW), and T32DK007276 (DGM). Additional support was provided by the Robert E. Leet and Clara Guthrie Patterson Trust Mentored Clinical Research Award (DGM). The content is the responsibility of the authors alone and does not necessarily reflect the views or policies of the Department of Health and Human Services, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government. These organizations were not involved in study design, analysis, interpretation, or manuscript creation. This study was presented at the American Society of Nephrology meeting at New Orleans, LA, October 31–November 5, 2017.
Publisher Copyright:
© 2017
PY - 2018/3
Y1 - 2018/3
N2 - Introduction: As part of the precision medicine initiative, the National Institutes of Health/National Institute of Diabetes and Digestive Kidney Diseases has proposed collecting human kidney tissue to discover novel therapeutic targets from patients with kidney diseases. Patient attitudes on participating in kidney biopsy−based research are largely unknown. Methods: We evaluated attitudes toward donating kidney tissue to research among participants who had experienced a clinically indicated kidney biopsy, through a survey conducted 9 months (interquartile range, 5−13 months) after their biopsy. Results: Of the 177 participants contacted, 117 (66%) participated in the survey. A total of 85 participants (73%) reported that they would allow additional needle passes during a clinically indicated biopsy to donate kidney tissue for research. As reasons for participating in such a study, the participants reported the desire to help others and to contribute to science, and the lack of additional burden while participating in such a study. In a multivariable logistic model, older and African American participants had lower odds of allowing an additional pass for research (odds ratio: age ≥65 years [vs. ≤40], 0.15 [95% confidence interval, 0.03−0.73]; African Americans (vs. all others), 0.15 [95% confidence interval, 0.05−0.44]). However, participants’ self-reported biopsy complications such as pain, anxiety, and hematuria did not affect their willingness to allow additional passes. A total of 23 participants (20%) stated that they would agree to undergo a biopsy for research even if it was not clinically indicated. Conclusion: Among patients who had experienced a kidney biopsy, a majority were amenable to additional needle passes to donate kidney tissue for research during a future, clinically indicated biopsy, whereas a minority would undergo a biopsy for research purpose only.
AB - Introduction: As part of the precision medicine initiative, the National Institutes of Health/National Institute of Diabetes and Digestive Kidney Diseases has proposed collecting human kidney tissue to discover novel therapeutic targets from patients with kidney diseases. Patient attitudes on participating in kidney biopsy−based research are largely unknown. Methods: We evaluated attitudes toward donating kidney tissue to research among participants who had experienced a clinically indicated kidney biopsy, through a survey conducted 9 months (interquartile range, 5−13 months) after their biopsy. Results: Of the 177 participants contacted, 117 (66%) participated in the survey. A total of 85 participants (73%) reported that they would allow additional needle passes during a clinically indicated biopsy to donate kidney tissue for research. As reasons for participating in such a study, the participants reported the desire to help others and to contribute to science, and the lack of additional burden while participating in such a study. In a multivariable logistic model, older and African American participants had lower odds of allowing an additional pass for research (odds ratio: age ≥65 years [vs. ≤40], 0.15 [95% confidence interval, 0.03−0.73]; African Americans (vs. all others), 0.15 [95% confidence interval, 0.05−0.44]). However, participants’ self-reported biopsy complications such as pain, anxiety, and hematuria did not affect their willingness to allow additional passes. A total of 23 participants (20%) stated that they would agree to undergo a biopsy for research even if it was not clinically indicated. Conclusion: Among patients who had experienced a kidney biopsy, a majority were amenable to additional needle passes to donate kidney tissue for research during a future, clinically indicated biopsy, whereas a minority would undergo a biopsy for research purpose only.
KW - acute kidney injury
KW - biopsy
KW - chronic kidney disease
KW - kidney diseases
KW - survey
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U2 - 10.1016/j.ekir.2017.11.008
DO - 10.1016/j.ekir.2017.11.008
M3 - Article
C2 - 29725645
AN - SCOPUS:85044843789
SN - 2468-0249
VL - 3
SP - 412
EP - 416
JO - Kidney International Reports
JF - Kidney International Reports
IS - 2
ER -