Asare Matthew, Heckler Charles E, Culakova Eva, Kamen Charles S, Kleckner Amber S, Minasian Lori M, Wendler David S, Feige Michelle, Weil Carol J, Long Joan, Cole Sharon K, Onitilo Adedayo A, Peppone Luke J, Morrow Gary R, Janelsins Michelle C
Department of Public Health, Robbins College of Health and Human Sciences, Baylor University, One Bear Place, Waco, TX, 97343, USA.
James P. Wilmot Cancer Institute, University of Rochester Medical Center, Rochester, NY, USA.
J Cancer Educ. 2020 Apr;35(2):292-300. doi: 10.1007/s13187-018-1464-z.
To examine whether (a) non-minority participants differed from racial minority participants in the understanding of biospecimens collected for research purposes, (b) patients differed from comparison group in their understanding of the ways their biospecimens could be used by researchers, and (c) participants received adequate information before consenting to donate blood for research studies. We analyzed cross-sectional data from female breast cancer patients scheduled to receive chemotherapy at the National Cancer Institute (NCI) Community Oncology Research Program (NCORP) clinical sites and a healthy comparison group. After reading a consent form related to biospecimens and consenting to participate in a clinical trial, participants' understanding of biospecimen collection was evaluated. Linear models were used to compare scores between non-minority and racial minority participants as well as cancer and non-cancer comparisons adjusting for possible confounding factors. A total of 650 participants provided evaluable data; 592 were non-minority (Caucasian) and 58 participants were a racial minority (71% Black and 29% other). There were 427 cancer patients and 223 comparisons. Non-minority participants scored higher than racial minorities on relevance-to-care items (diff. = 0.48, CI 0.13-0.80, p = 0.001). Comparison group scored higher than cancer patients on relevance-to-care items (diff. = 0.58, CI 0.37-0.78). A moderate number of the participants exhibited a poor understanding of biospecimen collection across all racial/ethnic backgrounds, but racial minority participants' scores remained lower in the relevance-to-care subscale even after adjusting for education and reading level. Differences were also noted among the patients and comparison group. Researchers should facilitate comprehension of biospecimen collection for all study participants, especially racial minority participants.
(a)非少数族裔参与者与少数族裔参与者在对为研究目的收集的生物样本的理解上是否存在差异;(b)患者与对照组在对研究人员使用其生物样本方式的理解上是否存在差异;以及(c)参与者在同意为研究献血之前是否获得了充分的信息。我们分析了来自美国国立癌症研究所(NCI)社区肿瘤学研究项目(NCORP)临床站点计划接受化疗的女性乳腺癌患者以及一个健康对照组的横断面数据。在阅读与生物样本相关的同意书并同意参与一项临床试验后,评估参与者对生物样本采集的理解。使用线性模型比较非少数族裔和少数族裔参与者之间以及癌症患者与非癌症对照之间的得分,并对可能的混杂因素进行调整。共有650名参与者提供了可评估的数据;592名是非少数族裔(白人),58名是少数族裔(71%为黑人,29%为其他)。有427名癌症患者和223名对照。在与护理相关性项目上,非少数族裔参与者的得分高于少数族裔(差异=0.48,CI 0.13 - 0.80,p = 0.001)。对照组在与护理相关性项目上的得分高于癌症患者(差异=0.58,CI 0.37 - 0.78)。在所有种族/族裔背景中,有相当数量的参与者对生物样本采集的理解较差,但即使在调整教育程度和阅读水平后,少数族裔参与者在与护理相关性子量表上的得分仍然较低。在患者和对照组之间也发现了差异。研究人员应为所有研究参与者,尤其是少数族裔参与者,促进对生物样本采集的理解。