Dataset Information

A Survey of Patient Attitudes Toward Participation in Biopsy-Based Kidney Research.

ABSTRACT: 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.

SUBMITTER: Moledina DG

PROVIDER: S-EPMC5932306 | biostudies-literature | 2018 Mar

REPOSITORIES: biostudies-literature

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A Survey of Patient Attitudes Toward Participation in Biopsy-Based Kidney Research.

Moledina Dennis G DG Cheung Bettina B Kukova Lidiya L Luciano Randy L RL Peixoto Aldo J AJ Wilson F Perry FP Alfano Sandra S Parikh Chirag R CR

Kidney international reports 20171120 2

<h4>Introduction</h4>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.<h4>Methods</h4>We evaluated attitudes toward donating kidney tissue to research among participants who had experienced a clinically ...[more]

PMID: 29725645

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Project description:BackgroundInternet interventions have been proposed to improve the accessibility and use of evidence-based psychological treatments. However, little is known about attitudes toward such treatments, which can be an important barrier to their use.ObjectiveThis study aimed to (1) determine attitudes toward guided internet interventions, (2) assess its acceptability compared with other internet-based formats, and (3) explore predictors of acceptance.MethodsA convenience-sample Web-based survey (N=646) assessed attitudes toward guided internet therapies (ie, perceived usefulness and helpfulness, and advantage relative to face-to-face therapy), preferences for delivery modes (ie, e-preference: guided internet interventions, unguided internet interventions, or videoconferencing psychotherapy), and potential predictors of attitudes and preferences: sociodemographics, help-seeking-related variables, attachment style, and perceived stress.ResultsAlthough most participants perceived internet interventions as useful or helpful (426/646, 65.9%), a few indicated their advantage relative to face-to-face therapy (56/646, 8.7%). Most participants preferred guided internet interventions (252/646, 39.0%) over videoconferencing psychotherapy (147/646, 22.8%), unguided internet interventions (124/646, 19.2%), and not using internet interventions (121/646, 18.8%; missing data: 1/646, 0.2%). Attachment avoidance and stress were related to e-preference (all P<.05). Moreover, preference for therapist-guided internet interventions was higher for individuals who were aware of internet-based treatment (χ26=12.8; P=.046).ConclusionsParticipants assessed therapist-guided internet interventions as helpful, but not equivalent to face-to-face therapies. The vast majority (523/646, 81.0%) of the participants were potentially willing to use internet-based approaches. In lieu of providing patients with only one specific low-intensity treatment, implementation concepts should offer several options, including guided internet interventions, but not limited to them. Conversely, our results also indicate that efforts should focus on increasing public knowledge about internet interventions, including information about their effectiveness, to promote acceptance and uptake.

Project description:BackgroundElectronic health records (EHRs) are ubiquitous. Yet little is known about the use of EHRs for prospective research purposes, and even less is known about patient perspectives regarding the use of their EHR for research.ObjectiveThis paper reports results from the initial obesity project from the Greater Plains Collaborative that is part of the Patient-Centered Outcomes Research Institute's National Patient-Centered Clinical Research Network (PCORNet). The purpose of the project was to (1) assess the ability to recruit samples of adults of child-rearing age using the EHR; (2) prospectively assess the willingness of adults of child-rearing age to participate in research, and their willingness (if parents) to have their children participate in medical research; and (3) to assess their views regarding the use of their EHRs for research.MethodsThe EHRs of 10 Midwestern academic medical centers were used to select patients. Patients completed a survey that was designed to assess patient willingness to participate in research and their thoughts about the use of their EHR data for research. The survey included questions regarding interest in medical research, as well as basic demographic and health information. A variety of contact methods were used.ResultsA cohort of 54,269 patients was created, and 3139 (5.78%) patients responded. Completers were more likely to be female (53.84%) and white (85.84%). These and other factors differed significantly by site. Respondents were overwhelmingly positive (83.9%) about using EHRs for research.ConclusionsEHRs are an important resource for engaging patients in research, and our respondents concurred. The primary limitation of this work was a very low response rate, which varied by the method of contact, geographic location, and respondent characteristics. The primary strength of this work was the ability to ascertain the clinically observed characteristics of nonrespondents and respondents to determine factors that may contribute to participation, and to allow for the derivation of reliable study estimates for weighting responses and oversampling of difficult-to-reach subpopulations. These data suggest that EHRs are a promising new and effective tool for patient-engaged health research.

Project description:IntroductionAs Zika virus infection during pregnancy can cause a range of congenital anomalies, pregnant women may be a target population for vaccination in future outbreaks. Their inclusion in vaccine trials is critical to ensure safe and effective vaccines in pregnancy. Though many vaccine candidates are in development, pregnant women's willingness to participate in Zika virus vaccine research is unknown. This study aims to describe pregnant women's attitudes toward Zika virus vaccine research participation, as well as perceived barriers to and facilitators of enrollment.MethodsPregnant and recently postpartum women (n = 128) attending prenatal care at Massachusetts General Hospital completed surveys querying their willingness to participate in four hypothetical Zika virus vaccine trials and their motivations for participation. Demographics, information on prior Zika virus exposure, and vaccine acceptance were collected.ResultsMost women (77%) accepted participation in at least one hypothetical Zika virus vaccine trial, and women were significantly more likely to accept prospective enrollment in an inactivated vaccine trial compared to a live-attenuated vaccine trial (p-value <0.0001) or a nucleic acid-based vaccine trial (p-value <0.0444). Important motivators for participation included evidence from research with pregnant and non-pregnant people, a desire to protect the baby from Zika, perceptions of vaccine safety, and provider recommendation.ConclusionsA majority of women in this cohort were willing to participate in a Zika virus vaccine trial while pregnant, however, differences in acceptance exist between vaccine platforms. The high value placed on evidence by participants highlights the importance of gathering and communicating pregnancy-specific data to potential research participants and their providers. Women's motivations for accepting research participation during pregnancy are important to inform the Zika virus vaccine research agenda, candidate prioritization, and trial design.

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Dataset Information

A Survey of Patient Attitudes Toward Participation in Biopsy-Based Kidney Research.

Publications

A Survey of Patient Attitudes Toward Participation in Biopsy-Based Kidney Research.

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