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Background: In the thick of the ongoing global crises of the COVID-19 pandemic, uprisings against anti-Black racism and police brutality, and anti-Asian racism and violence, Black, indigenous, and people of color (BIPOC) adolescent and young adult (AYA) cancer patients may be particularly vulnerable and exploited. Whilst embroiled in sociopolitical complexity, BIPOC AYAs are increasingly called upon to contribute as patient advocates in AYA oncology research and advocacy. Researchers, clinicians, and advocates in AYA oncology must dismantle long-standing racism and create meaningful structural change. The purpose of this study is to derive vital best practices for implementing antiracist patient engagement in AYA oncology research and advocacy that are co-developed by BIPOC AYA cancer patients and oncology professionals. Methods: We utilized a modified Delphi technique with a panel of BIPOC AYA cancer patients (n = 32) to build consensus opinions on professional recommendations from a prior study (Cheung et al., 2021), and to generate antiracist best practices in patient engagement. The Delphi study was comprised of three consecutive and iterative survey rounds over the course of 8 months in 2021;participants were BIPOC AYAs diagnosed with cancer between ages 15-36 years. Results: Results detail best practices for the implementation of antiracist patient engagement across all research activities within the Patient-Centered Outcomes Research Institute's (PCORI) Framework for Patient Engagement. For example, BIPOC AYAs agreed with oncology professionals' high priority recommendation for including BIPOC AYAs at the highest levels of decision making in research topic selection. As such, a best practice is for researchers to ensure that such representatives not only hold BIPOC AYA identity, but also hold direct experience with the particular oncology diagnosis, issue, or other outcome of interest. Additionally, BIPOC AYAs concurred with oncology professionals' high priority for “transparency, honesty, and trust” as a core principle for best practices in patient engagement. They further explained that trustworthy relationships are especially important when collaborating with teens and young adults, who are developmentally just coming into their own. When describing successful experiences of inclusion, participants ranked “build collaborative relationships with BIPOC AYA communities and listen to patients not usually heard” and “recruit a diverse range of BIPOC patients and let them give actual input into the study” as the highest priority best practices. Conclusions: Findings from this study are instructional for AYA oncology researchers, clinicians, and advocates to prevent harmful tokenism and implement genuine antiracist inclusion to advance health equity. Future research should investigate best practices within unique clinical settings.
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Purpose: Describe associations between changes in employment during the COVID-19 pandemic and financial toxicity among adolescent and young adult (AYA) cancer patients and survivors. Methods: Eligible individuals were diagnosed between 15-39 years of age, currently age ≥18, and recruited through the Huntsman-Intermountain Adolescent and Young Adult Cancer Care Program. We sent the survey to N=709. Survey questions included demographics, employment, and the 11-item COmprehensive Score for financial Toxicity (COST) which captures financial toxicity in the last four weeks. COST is scored from 0 to 44 with lower scores indicating greater financial toxicity. Scores were dichotomized as high (0-21) or low (22-44). Changes in employment since March 2020 were categorized as no change, increase in hours, and decrease in hours/lost job. We calculated descriptive statistics and fit a multivariable logistic regression to examine the association between employment change and financial toxicity controlling for current age, gender, and treatment status. Results: Of 280 respondents (39.5% participation), 198 (70.7%) were employed prior to the pandemic and were thus included in analyses. Employed individuals were a mean of 29.4 years of age (range 18-58), 64.3% were female, and 50.5% had received cancer treatment since March 2020. Nearly a third (31.3%) had lost their job or reported reduced hours;50.3% reported high financial toxicity. Among those previously employed, participants who lost their job or had their hours reduced had nearly six times the odds of high financial toxicity than those who reported no change in hours (Odds Ratio [OR]=5.8, 95% Confidence Interval [CI]: 2.6-12.9). In the same model, the odds of reporting high financial toxicity was over twice as high among females than males (OR=2.3, 95% CI: 1.2-4.5). Treatment status and age were not significant. Conclusions: Employment changes during the COVID-19 pandemic resulted in increased financial toxicity among a population already susceptible to high financial hardship. Societal gender inequity appears to be mirrored in participants' financial toxicity during the pandemic. Employment interventions for patients and survivors of AYA cancers who have experienced job loss or reduction in work hours during the pandemic are needed and may particularly benefit females.
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Purpose: To describe adolescent and young adult (AYA) cancer patients' and survivors' experiences with telehealth during the COVID-19 pandemic. Methods: Eligible participants were identified through the Huntsman Intermountain Adolescent and Young Adult Cancer Care Program, which provides age-specific programming and patient navigation to AYA cancer patients and survivors in Utah and surrounding Mountain West states. Participants were emailed an online survey if they were currently age 18 or older and had been diagnosed with cancer between the ages of 15-39 years. We applied descriptive statistics to summarize demographics, comfortability with technology, access to reliable internet connection, and perceived quality of care while using telehealth. Results: AYAs (N=280) were an average of 29.4 years old at survey (range 18-58);65.2% were female and 82.4% non-Hispanic white. Over half (54.2%) had received cancer treatment since March 2020. All participants reported owning a computer, tablet, and/or smart phone they could use for telehealth appointments. The majority (93.5%) reported almost always or always having a reliable internet connection. AYAs felt most comfortable having a telehealth appointment in their own home (96.4%);only 12.5% felt comfortable using telehealth at work. Since March 2020, (N=183) 65.4% had a health care visit moved to a telehealth platform due to COVID-19. Of those who recently moved to telehealth, 60.1% had an oncology visit, 33.9% had a primary care visit, and 31.1% had a mental health visit. Additionally over one-third (35.2%) reported the quality of their medical care had decreased since moving to telehealth. This was most commonly due to 1) troubles with audio, video, or connecting through telehealth platforms;2) telehealth visits feeling impersonal;and 3) feeling that providers more easily dismissed or did not fully address their symptoms. Conclusions: Although AYAs are digital natives, over one third of AYAs feel the quality of their medical care has decreased since moving to telehealth for COVID-19. Further research should explore medical provider training in using telehealth systems and encourage telehealth practices that help AYAs feel more supported and understood.
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In this piece, I delve into some thoughts I've had about decision theory. These have been inspired by the vaccine rollout phase of the COVID-19 Pandemic. I focus on decision making under uncertainty, as it relates to the decision to get vaccinated or not.
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Background: In the US, pts living in rural areas have higher CRC mortality rates than urban areas. Clinical guidelines recommend testing for BRAF and RAS mutations and deficient mismatch repair/microsatellite instability in pts with mCRC. However, data on biomarker testing rates in rural communities compared with urban areas are limited. We surveyed ONC in the US who practice in rural areas or urban clusters to identify biomarker testing patterns and barriers (data previously reported) and conducted interviews with a select group of respondents to further understand key differences that may contribute to substandard biomarker testing rates in rural areas. Methods: A 2-part (quantitative and qualitative) survey was conducted with ONC who spend > 40% of their time providing direct care to pts in rural areas or urban clusters and who had treated ≥2 pts with stage IV mCRC in the month prior to the survey. After screening, a subset of those who completed the quantitative survey participated in the qualitative survey (a 30- minute, web-assisted, telephone interview). The interview questions targeted 6 areas: clinical practice description, biomarker and genomic testing patterns, pathology and molecular tumor board, tumor tissue journey, electronic health records, and training/educational opportunities. Results: Of the 99 ONC who responded to the quantitative survey, 17 were interviewed for the qualitative survey from June 16-29, 2021. A key finding of the quantitative survey was that although ONC reported being familiar with biomarkers relevant to mCRC, the reported rate of biomarker testing was suboptimal. The interviews probed reasons why testing does not align with current guidelines and found that challenges exist throughout the tumor tissue journey including insufficient tumor tissue available for testing (especially in the relapsed/refractory setting);lack of or limited protocols, clinical decision support systems, reflexive testing, and molecular tumor boards;lengthy and difficult-to-navigate next-generation sequencing reports;and financial toxicity surrounding biomarker tests (especially for underinsured pts), among other barriers. Despite these challenges, ONC reported easy access to third-party reference labs and electronic references, such as NCCN and UpToDate. Although telehealth visits have nearly quadrupled during the COVID pandemic, access to telehealth may be limited for pts living in rural areas or urban clusters. Conclusions: The ONC surveyed reported that practicing in rural/urban clusters poses unique challenges related to tissue acquisition, practice resources, pts' ability to pay, and clinical knowledge gaps that may affect biomarker testing rates in pts with mCRC. Addressing these gaps is warranted if optimal utilization of precision medicine tools is to be realized.
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Background: Racial/ethnic minorities have disproportionately increased risk of contracting COVID-19 and experiencing severe illness;they also have worse breast cancer (BC) outcomes. COVID-19 outcomes among racial/ethnic minorities with BC are currently unknown. We sought to compare clinicopathologic characteristics and COVID-19 outcomes stratified by race/ethnicity. Methods: The COVID-19 and Cancer Consortium registry (NCT04354701) was used to identify patients with invasive BC and laboratory-confirmed SARS-CoV-2 diagnosed in the U.S. between 2020-03-06 and 2021-02-04. The primary analysis was restricted to women who selfidentified as non-Hispanic White (NHW), nonHispanic Black (NHB), or Hispanic (H). Demographic, cancer characteristics, and COVID-19 outcomes were evaluated. COVID-19 outcomes included: hospital admission, intensive care unit (ICU) admission, mechanical ventilation, death within 30 days of COVID-19 diagnosis and death from any cause during follow-up. Descriptive statistics were used to compare clinicopathologic characteristics and Fisher exact tests were used to compare COVID19 outcomes across the 3 racial/ethnic groups. Results: A total of 1133 patients were identified of which 1111 (98%) were women;of which 575 (52%) NHW, 243 (22%) NHB, 183 (16%) H, and 110 (10%) other/unknown. Baseline characteristics differed among racial/ethnic groups. H were younger (median age: NHW 63y;NHB 62y;H 54y) and more likely to be never smokers (NHW 62%;NHB 62%;H 78%). NHB had higher rates of obesity (NHW 40%;NHB 54%;H 46%), diabetes (NHW 16 %;NHB 32%;H 20%) and combined moderate and severe baseline COVID-19 at presentation (NHW 28%;NHB 42%;H 28%). Cancer characteristics are as shown (Table). Significant differences were observed in outcomes across racial/ethnic groups including higher rates of hospital admission (NHW 34%;NHB 49%;H 34%;P <0.001), mechanical ventilation (NHW 3%;NHB 9%;H 5%;P=0.002), 30-day mortality (NHW 6%;NHB 9%;H 4%;P=0.043) and total mortality (NHW 8%;NHB 12%;H 5%;P=0.05) among NHB compared to NHW and H. Conclusions: This is the largest study to show significant differences in COVID-19 outcomes by racial/ethnic groups of women with BC. The adverse outcomes in NHB could be due to higher moderate to severe COVID-19 at presentation and preexisting comorbidities. H did not have worse outcomes despite having more active disease and recent anti-cancer therapy, including with cytotoxic chemotherapy - potentially due to younger age and nonsmoking status. (Table Presented).
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The COVID-19 pandemic is arguably the worst crisis the world has faced, so far, in this new century. We haven’t seen a pandemic like this since the 1918 Flu at the beginning of the last century, and, as of this writing, there appears to be no end in sight. What those of us who’re focused on quantitative methods have noticed, in addition to the many people dying, becoming ill, and losing their livelihoods, is the importance of quantitative literacy to an understanding of what’s going on. That’s what this article is about. Specifically, it’s about how the COVID-19 pandemic is illustrating the importance of understanding different aspects of probability theory, particularly conditional probability. © 2021, National Numeracy Network. All rights reserved.