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Disparities in cancer care: A long way to go
CA: A Cancer Journal for Clinicians ( IF 254.7 ) Pub Date : 2023-11-14 , DOI: 10.3322/caac.21822
Shail Maingi 1 , Don S Dizon 2, 3, 4, 5
Affiliation  

The 2023 American Cancer Society (ACS) report on cancer disparities highlights the persistent issues related to inequities in cancer incidences and outcomes.1 Black individuals continue to be diagnosed at higher incidence rates than White individuals with multiple cancers, including colorectal, pancreatic, lung, prostate, and cervical cancers. The report also reveals that Black patients with the same cancers as White patients have a 16%–20% higher mortality rate.

These findings highlight that disparities persist and how difficult the challenges are to address them, particularly when they cannot be attributed easily to any one factor. In the 2023 ACS report, for example, the authors looked at the impact of education on cancer mortality rates and found that those with ≤12 years of education had a 2.5 times higher rate of mortality than those with ≥16 years of education. The protective effect of years of education, however, had less effect on mortality among Black individuals with cancer, who continued to have a higher mortality rate compared with White individuals across all educational thresholds. Therefore, the higher cancer incidence rates are multiplicative for Black individuals who have multiple identities associated with worse outcomes.

The finding that Black individuals who are highly educated and still have higher cancer mortality rates brings up two important issues. The first is the devastating and pervasive impact of structural racism and minority status on the health of Black individuals regardless of socioeconomic strides and success. The authors note that these manifest as a lack of access to high-quality services, financial burdens that limit treatment, or biases that prevent screening and preventative efforts, among others.

Implicit bias on a provider and staff level can also contribute to differences in the quality of cancer care being delivered and exacerbate medical mistrust. For example, Enzinger and colleagues evaluated access to opioids among people on Medicare who were dying of cancer (n = 318,549) in the 30 days before death or hospice enrollment.2 Compared with White patients, Black and Hispanic patients were less likely to receive any opioid, and, if given, they were more likely to receive a lower daily and a lower total dose. Black men also reportedly were more likely to undergo urine drug screening. According to this report, the disparities were not attenuated by adjustments for socioeconomic factors (e.g., rurality, community-level factors). The second important issue regarding access to opioids is that it emphasizes the importance of applying an intersectional lens to disparities work in order to make progress, which is something that is missing from the current analyses.

Intersectionality was originally used by Kimberlé Crenshaw in Black feminist theory as a critical framework to understand power and oppression that takes into account the multiple social categories one identifies with and interacts through.3, 4 In medicine, as shown in these publications, it goes beyond race and includes gender, location, and socioeconomic markers (e.g., education, insurance). For example, take cervical cancer screening rates in the United States. Chen et al. showed that, compared with US-born White women, immigrant women across race and ethnic backgrounds had lower screening rates. Access to care and socioeconomic barriers were noted in the immigrant Hispanic community, but lack of awareness/education about human papillomavirus appeared to be the primary barrier for immigrant women from White and Asian backgrounds.5 Both the 2023 ACS report and the article by Chen et al. show that, although important findings are uncovered when any one factor is evaluated in isolation, the real work is addressing what is at the root of those differences, and we cannot effectively intervene to mitigate the disparities.

Another example of the importance using intersectional lenses in cancer disparities work involved sexual and gender minority (SGM; also known as LGBTQ+) individuals. Collection of sexual orientation and gender identity data is largely missing in the databases used in this report (i.e., the National Cancer Institute’s Surveillance, Epidemiology, and End Results Program; the National Program of Cancer Registries; and the National Center for Health Statistics). SGM people are less likely to be offered appropriate cancer screening despite having a higher risk of multiple cancers, including breast, ovarian, pancreatic, and lung. In addition, across the cancer continuum, they receive a lower quality of care, contributing to more anxiety and depression during survivorship, and they even have higher rates of cancer recurrence. Multiple studies indicate worse outcomes for SGM people of color, including in palliative care settings, in which Black and Hispanic SGM patients were two to four times more likely than their White SGM counterparts to report discrimination.6 Current recommendations and best practices include collecting sexual orientation and gender identity data,7, 8 but current political environments focused on banning gender-affirming care may put this at risk, putting the movement to address SGM disparities to the test.

Also problematic is using race as the primary characteristic around which we design efforts to effectively address cancer disparities; this is inadequate. In part, this is because race is a social construct fundamentally informed by social perceptions rather than by scientific foundation.9 Ultimately, it is a subjective descriptor of a phenotype that is a poor substitute for genotype. This point was made in an early onset lung cancer study that included enrolled volunteers (n = 555 self-reported Caucasian/non-Hispanic individuals and n = 191 self-reported Black individuals), all of whom underwent genotyping that included a 13 short tandem repeat locus previously established to characterize individual ancestry.10 Among the study participants, European ancestry was found to correlate poorly with self-described race, with significant overlap in individual ancestry across Black and White self-described volunteers. Conflating racial differences with biologic differences and inaccurately/incompletely measuring racial and ethnic differences complicates this work.

Fortunately, both national and local programs are emerging to address disparities, and many of them are described by the authors of the 2023 ACS report. Still, much more work is needed. Not only do we have to creatively challenge our sources of descriptive data, data collection, and data accuracy, as indicated above; we also need to include community voices and develop a diverse workforce that reflects all of our surrounding communities.

We cannot effectively address disparities in cancer outcomes in a vacuum. The factors at play are structural, embedded within society over generations. However, we can do our part by ensuring community engagement in our efforts, listening to what those we seek to help tell us are the issues, and helping define the priorities to achieve equity. These factors are all essential. Providing opportunities across diverse populations to explore medicine and oncology early on may help to inspire a diverse workforce. Most of all, engaging with cultural humility from a systems standpoint and holding those who work within it to ethical standards are paramount. The related critical need to address bias in the workforce requires evidence-based interventions that are focused on lasting change that must occur beyond any one mandatory training module. Finally, reflecting on our own beliefs and how they affect our behaviors and attitudes, the care we provide, and the words we write in patient charts and elsewhere, is critical. All of this matters—from the national, to the institutional, to the individual level.

Ultimately, intersectional analyses can us help address the difference between describing disparities and addressing inequities.9 Making the effort to start collecting data that accurately reflect the lived experiences of our patients with cancer requires cultural humility and meaningful community engagement. This will allow us to move from describing disparities to developing evidence-based programs for all of our patients to achieve equitable care and, as this ACS study suggests, give everyone an equal chance to survive cancer.



中文翻译:

癌症治疗的差异:还有很长的路要走

2023 年美国癌症协会 (ACS) 关于癌症差异的报告强调了与癌症发病率和结果不平等相关的持续存在的问题。1黑人被诊断出患有多种癌症的发病率仍然高于白人,这些癌症包括结直肠癌、胰腺癌、肺癌、前列腺癌和宫颈癌。报告还显示,患有相同癌症的黑人患者的死亡率比白人患者高 16%–20%。

这些发现突显了差距依然存在,以及解决这些挑战是多么困难,特别是当这些差距不能轻易归因于任何一个因素时。例如,在 2023 年 ACS 报告中,作者研究了教育对癌症死亡率的影响,发现受教育年限≤12 年的人的死亡率是受教育年限≥16 年的人的 2.5 倍。然而,多年教育的保护作用对患有癌症的黑人患者的死亡率影响较小,在所有教育水平上,与白人患者相比,黑人的死亡率仍然较高。因此,对于具有多重身份的黑人来说,较高的癌症发病率与较差的结果相关。

受过高等教育的黑人的癌症死亡率仍然较高,这一发现提出了两个重要问题。首先是结构性种族主义和少数群体地位对黑人健康造成的破坏性和普遍影响,无论社会经济取得怎样的进步和成功。作者指出,这些问题表现为缺乏获得高质量服务、限制治疗的经济负担或妨碍筛查和预防工作的偏见等。

医疗服务提供者和工作人员的隐性偏见也会导致癌症护理质量的差异,并加剧医疗不信任。例如,Enzinger 及其同事评估了 在死亡或入院前 30 天内因癌症死亡的 Medicare 患者 ( n = 318,549) 使用阿片类药物的情况。2与白人患者相比,黑人和西班牙裔患者接受任何阿片类药物的可能性较小,而且如果给予,他们更有可能接受较低的每日剂量和较低的总剂量。据报道,黑人男性也更有可能接受尿液药物筛查。根据这份报告,社会经济因素(例如农村、社区层面的因素)的调整并没有缩小这种差距。关于阿片类药物获取的第二个重要问题是,它强调了将交叉视角应用于差异工作以取得进展的重要性,而这是当前分析中所缺少的。

交叉性最初被金伯利·克伦肖(Kimberlé Crenshaw)在黑人女权主义理论中用作理解权力和压迫的关键框架,该框架考虑了人们所认同并相互作用的多个社会类别。3, 4在医学领域,正如这些出版物所示,它超越了种族,还包括性别、地点和社会经济标记(例如教育、保险)。以美国的宫颈癌筛查率为例。陈等人。研究表明,与美国出生的白人女性相比,不同种族和民族背景的移民女性的筛查率较低。在西班牙裔移民社区中,人们注意到获得护理和社会经济障碍,但缺乏对人乳头瘤病毒的认识/教育似乎是来自白人和亚洲背景的移民妇女的主要障碍。5 2023 年 ACS 报告和 Chen 等人的文章。表明,虽然孤立评估任何一个因素时都会发现重要的发现,但真正的工作是解决这些差异的根源,我们无法有效干预以缩小差异。

在癌症差异工作中使用交叉视角的重要性的另一个例子涉及性少数群体(SGM;也称为 LGBTQ+)个体。本报告使用的数据库(即国家癌症研究所的监测、流行病学和最终结果计划;国家癌症登记计划;以及国家健康统计中心)很大程度上缺少性取向和性别认同数据的收集。尽管 SGM 人士患多种癌症(包括乳腺癌、卵巢癌、胰腺癌和肺癌)的风险较高,但接受适当癌症筛查的可能性较小。此外,在整个癌症连续过程中,他们接受的护理质量较低,导致生存期间更多的焦虑和抑郁,甚至癌症复发率更高。多项研究表明,SGM 有色人种的结局更糟,包括在姑息治疗环境中,黑人和西班牙裔 SGM 患者报告歧视的可能性是白人 SGM 患者的两到四倍。6当前的建议和最佳实践包括收集性取向和性别认同数据,7, 8但当前专注于禁止性别肯定护理的政治环境可能会使这一点面临风险,从而使解决 SGM 差异的运动面临考验。

同样存在问题的是将种族作为主要特征,围绕这一特征我们设计有效解决癌症差异的措施;这是不够的。在某种程度上,这是因为种族是一种社会建构,从根本上讲是由社会观念而不是科学基础决定的。9归根结底,它是表型的主观描述,不能很好地替代基因型。这一观点是在一项早发性肺癌研究中提出的,该研究包括招募志愿者(n  = 555 名自我报告的白人/非西班牙裔个体和n  = 191 名自我报告的黑人个体),所有这些人都接受了基因分型,其中包括 13 个短串联基因先前建立的用于表征个体血统的重复基因座。10在研究参与者中,欧洲血统被发现与自我描述的种族相关性较差,黑人和白人自我描述的志愿者的个人血统存在显着重叠。将种族差异与生物学差异混为一谈以及不准确/不完整地衡量种族和民族差异使这项工作变得复杂。

幸运的是,国家和地方项目正在不断涌现,以解决差异问题,其中许多项目已由 2023 年 ACS 报告的作者描述。尽管如此,还需要做更多的工作。如上所述,我们不仅必须创造性地挑战我们的描述性数据来源、数据收集和数据准确性;我们还需要吸纳社区的声音,并培养一支能够反映所有周边社区的多元化员工队伍。

我们无法在真空中有效地解决癌症结果的差异。起作用的因素是结构性的,根植于社会的几代人之中。然而,我们可以通过确保社区参与我们的努力、倾听我们寻求帮助的人告诉我们的问题以及帮助确定实现公平的优先事项来尽自己的一份力量。这些因素都是必不可少的。为不同人群提供早期探索医学和肿瘤学的机会可能有助于激励多元化的劳动力。最重要的是,从系统的角度参与文化谦逊并让在其中工作的人员遵守道德标准是至关重要的。解决劳动力偏见的相关迫切需要需要基于证据的干预措施,这些干预措施的重点是必须在任何一种强制性培训模块之外发生的持久变化。最后,反思我们自己的信念以及它们如何影响我们的行为和态度、我们提供的护理以及我们在患者图表和其他地方写下的文字,这一点至关重要。所有这些都很重要——从国家层面到机构层面,再到个人层面。

最终,交叉分析可以帮助我们解决描述差异和解决不平等之间的差异。9努力开始收集准确反映癌症患者生活经历的数据需要文化谦逊和有意义的社区参与。这将使我们能够从描述差异转向为所有患者制定基于证据的计划,以实现公平的护理,并且正如这项 ACS 研究表明的那样,为每个人提供平等的癌症生存机会。

更新日期:2023-11-14
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