Howell Jennifer C, Parker Monica W, Watts Kelly D, Kollhoff Alexander, Tsvetkova Dobromira Z, Hu William T
Department of Neurology, Emory University School of MedicineAtlanta, GA, USA; Center for Neurodegenerative Diseases Research, Emory University School of MedicineAtlanta, GA, USA; Alzheimer's Disease Research Center, Emory University School of MedicineAtlanta, GA, USA.
Department of Neurology, Emory University School of MedicineAtlanta, GA, USA; Alzheimer's Disease Research Center, Emory University School of MedicineAtlanta, GA, USA.
Front Aging Neurosci. 2016 Dec 2;8:296. doi: 10.3389/fnagi.2016.00296. eCollection 2016.
African Americans are under-represented in Alzheimer's disease (AD)-related biomarker studies, and it has been speculated that mistrust plays a major factor in the recruitment of African Americans for studies involving invasive procedures such as the lumbar puncture (LP). We set out to determine factors associated with non-participation in a biomarker study aiming to explore cerebrospinal fluid (CSF) AD biomarker differences between older African Americans and Caucasians. We also surveyed participants' procedure-related perception (a standard medical procedure vs. a frightening invasive procedure) and reluctance, as well as the rate and type of post-procedure discomfort and complications. Among 288 subjects approached for study participation, 145 (50.3%) refused participation with concerns over LP being the most commonly reported reason. Relatively more African Americans than Caucasians reported concerns over LP as the main reason for non-participation (46% vs. 25%, = 0.03), but more African Americans also did not provide a specific reason for non-participation. Among those who completed study participation (including the LP), African Americans and Caucasians were similar in pre-LP perceptions and reluctance, as well as post-LP rates of discomfort or complication. Perceiving LP as a frightening invasive procedure, not race, is associated with increased likelihood of post-LP discomfort or complication (RR 6.2, 95% confidence interval 1.1-37.0). Our results indicate that LP is a well perceived procedure in a cohort of African American and Caucasian research participants, and is associated with few serious complications. The pre-procedure perception that the LP is a frightening invasive procedure significantly increases the risk of self-reported discomfort of complications, and African Americans may be more likely to turn down study participation because of the LP. Future studies will need to address factors associated with negative LP perceptions to further assure participants and reduce complication rates.
非裔美国人在阿尔茨海默病（AD）相关生物标志物研究中的代表性不足，据推测，不信任在招募非裔美国人参与诸如腰椎穿刺（LP）等侵入性检查的研究中起主要作用。我们着手确定与不参与一项生物标志物研究相关的因素，该研究旨在探索老年非裔美国人和白种人之间脑脊液（CSF）AD生物标志物的差异。我们还调查了参与者对该检查的相关认知（是标准医疗程序还是可怕的侵入性程序）和抵触情绪，以及检查后不适和并发症的发生率及类型。在被邀请参与研究的288名受试者中，145名（50.3%）拒绝参与，最常提及的原因是担心LP检查。报告因担心LP检查而不参与的非裔美国人相对多于白种人（46%对25%，P = 0.03），但也有更多非裔美国人未给出不参与的具体原因。在完成研究参与（包括LP检查）的人群中，非裔美国人和白种人在LP检查前的认知和抵触情绪，以及LP检查后的不适或并发症发生率方面相似。将LP视为可怕的侵入性检查，而非种族，与LP检查后不适或并发症的可能性增加相关（风险比6.2，95%置信区间1.1 - 37.0）。我们的结果表明，在非裔美国人和白种人研究参与者队列中，LP检查被普遍认可，且严重并发症较少。检查前认为LP是可怕的侵入性检查会显著增加自我报告的并发症不适风险，非裔美国人可能因LP检查而更有可能拒绝参与研究。未来的研究需要解决与对LP检查负面认知相关的因素，以进一步确保参与者并降低并发症发生率。
