Donating Tissue for Research: Patient and Provider Perspectives

Baer, Allison R.; Smith, Mary Lou; Bendell, Johanna C.

doi:10.1200/jop.2011.000399

Cited by 6 publications

(6 citation statements)

References 10 publications

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“…Reassuringly, only 7 % of our patients had concerns about the use and storage of blood/tissue samples for research, and indeed, many patients strongly felt that this was not an issue. This is supported by the results of other studies, which demonstrate that the majority of cancer patients would allow the use of their tissue for research [ 13 , 24 , 25 ]. In our survey, 78 % of patients would agree to donate tissue for genetic research, even if they were not told their genetic results, indicating patient support for genomic research into cancer.…”

Section: Discussionsupporting

confidence: 76%

Patients’ willingness to participate in clinical trials and their views on aspects of cancer research: results of a prospective patient survey

Moorcraft

Marriott

Peckitt

et al. 2016

Trials

171

142

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BackgroundRecruitment to clinical trials can be challenging and slower than anticipated. This prospective patient survey aimed to investigate the proportion of patients approached about a trial who agree to participate, their motivations for trial participation and their views on aspects of cancer research.MethodsPatients who had been approached about participation in any clinical trials in the Gastrointestinal and Lymphoma Unit at the Royal Marsden were invited to complete a questionnaire. The statistical analysis is mainly descriptive, with percentages being reported. Univariate logistic regression analysis was used to determine any associations between patient characteristics and patient responses.ResultsFrom August 2013–July 2014, 276 patients received 298 clinical trial patient information sheets and were asked to complete the questionnaire. The majority of patients (263 patients, 88 %) consented to a clinical trial and 249 of the 263 patients (95 %) completed the questionnaire. Multiple factors influenced decisions to participate in clinical trials, with patients stating that the most important reasons were that the trial offered the best treatment available and that the trial results could benefit others. Of the 249 questionnaire respondents, 78 % would donate their tissue for genetic research, 75 % would consider participating in studies requiring a research biopsy and 75 % felt that patients should be informed of trial results. Patients treated with palliative intent and those who had received multiple lines of treatment were more willing to consider research biopsies. Of the patients approached about a clinical trial of an investigational medicinal product, 48–50 % would have liked more information on the study drugs/procedures.ConclusionThe majority of patients approached about a clinical trial consented to one or more trials. Patients’ motivations for trial participation included potential personal benefit and altruistic reasons. A high proportion of patients were willing to donate tissue for research and to consider trials involving repeat biopsies. The majority of patients feel that participants should be informed of trial results and there is a group of patients who would like more detailed trial information.Electronic supplementary materialThe online version of this article (doi:10.1186/s13063-015-1105-3) contains supplementary material, which is available to authorized users.

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Section: Discussionsupporting

confidence: 76%

Patients’ willingness to participate in clinical trials and their views on aspects of cancer research: results of a prospective patient survey

Moorcraft

Marriott

Peckitt

et al. 2016

Trials

171

142

View full text Add to dashboard Cite

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“…More detailed consent forms/processes are required for biospecimen collection trials, and an ECOG study showed that a more detailed consent form increased trial participation (35). Patients appreciate being given detailed information on how their biological specimens will be stored and potentially used in the future for additional research.…”

Section: Discussionmentioning

confidence: 99%

Tumor Acquisition for Biomarker Research in Lung Cancer

Stevenson¹,

Christensen²,

Shoemaker³

et al. 2014

Cancer Investigation

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The biopsy collection data from two lung cancer trials that required fresh tumor samples be obtained for microarray analysis were reviewed. In the trial for advanced disease, microarray data were obtained on 50 patient samples, giving an overall success rate of 60.2%. The majority of the specimens were obtained through CT-guided lung biopsies (N=30). In the trial for early-stage patients, 28 tissue specimens were collected from excess tumor after surgical resection with a success rate of 85.7%. This tissue procurement program documents the feasibility in obtaining fresh tumor specimens prospectively that could be used for molecular testing.

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“…Others have found that therapeutic benefit could also override trust issues in minorities [11]. Moreover, similar to behavior in non-minority groups [37,38], among minorities already enrolled in a study, most would be willing to provide specimens [5, 11, 39]. Non-invasive methods of biospecimen collection may also favor the participation of Latinos (and others) in biomedical research.…”

Section: Discussionmentioning

confidence: 99%

Knowledge and Willingness to Provide Research Biospecimens Among Foreign-Born Latinos Using Safety-Net Clinics

et al. 2013

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Background Latinos tend to be under-represented in cancer research and in bio-repositories. Methods We conducted a Spanish-language, interviewer-administered cross-sectional survey of 331 foreign-born Latinos from Central and South America attending safety-net clinics in order to describe factors associated with knowledge about and intention to provide bio-specimens for research purposes. We used logistic regression and multiple imputation methods to evaluate associations between socio-cultural measures, medical trust, demographics, as well as knowledge about and intentions to provide bio-specimens. Results Almost half (47%) of respondents knew what bio-specimens were, and 67% said that they would provide a specimen after being given information about what this involved; this increased to 72% among those with prior knowledge. Controlling for covariates, Latinos with a high school education and above were more likely to know what a bio-specimen was and to say they would provide bio-specimens than were those with lower levels of education (adjusted OR [aOR] 2.85, 95% CI 1.37-5.96; and 3.49, 95% CI 1.41-8.63, p <.01, respectively). Those with greater social integration were more likely to know about bio-specimens than those with less integration (aOR 2.54, 95% CI 1.45-4.46, p=0.001). Higher endorsement of family values was independently associated with intent to give bio-specimens (aOR 1.11, 95% CI 1.02-1.20, p=0.017 per five-point increase in “familism” score). Medical mistrust was not related to intentions to provide specimens. Conclusions Our results suggest that interventions to increase willingness to provide bio-specimens could leverage trusted clinics or social networks and should consider individuals’ education and socio-cultural perspectives.

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Donating Tissue for Research: Patient and Provider Perspectives

Abstract: This article illustrates common patient and provider concerns about donating tissue for the purpose of research, discusses best practices, and provides answers to common patient questions.

Cited by 6 publications

References 10 publications

Patients’ willingness to participate in clinical trials and their views on aspects of cancer research: results of a prospective patient survey

Patients’ willingness to participate in clinical trials and their views on aspects of cancer research: results of a prospective patient survey

Tumor Acquisition for Biomarker Research in Lung Cancer

Knowledge and Willingness to Provide Research Biospecimens Among Foreign-Born Latinos Using Safety-Net Clinics

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