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Bridging the Care Gap: ASCENDS Project Aims to Reduce Cancer Disparities

By the ASCENDS team, University of Alabama at Birmingham

In the dynamic realm of cancer treatment, one persistent challenge demands our attention: the accessibility of care is far from straightforward.

Factors such as geographical location, income, employment status, and demographics can significantly influence the quality of care received. It’s high time we reshape this narrative, particularly for those colon cancer patients who face barriers to optimal cancer care.

And here’s the exciting part – you can be a driving force behind this transformation by simply sharing your story.

ASCENDS, an acronym for Advancing Surgical Care and Equity in the Deep South, is an initiative designed to revolutionize cancer care, especially for individuals in rural and minority communities who live in the states of Mississippi and Alabama.

ASCENDS is led by Dr. Maria Pisu and Dr. Daniel Chu, is funded by the National Institutes of Health, and is based at the University of Alabama at Birmingham.

How Can You Participate?

If you reside, or were treated, in the states of Mississippi or Alabama, we invite you to share your name and contact information. A member of the ASCENDS team will reach out to you for a one-time phone survey. And if you weren’t treated in these states but know someone who was, please consider sharing this opportunity!

ASCENDS is eager to hear about your experiences, triumphs, and even the challenges you’ve encountered. Why?

Because your voice can stir conversations, instigate change, and construct bridges within the landscape of cancer care. Your stories can influence policies, shape healthcare practices, and bridge long-standing gaps in the delivery of care.

 

There is also a little extra incentive – participants in the survey will be compensated for their time!

While the results of the study will drive the direction of the implementation, your results will be compiled into a plan of care recommendation that will be shared with healthcare providers in the deep South. Participants will be able to receive the study results once they are compiled. All personal information will be excluded.

Curious to Learn More?

Visit our website or connect with us on Facebook. Let’s work together to make a lasting impact on the world of cancer care!

 

This was an invited commentary from the ASCENDS team at the University of Alabama at Birmingham.

Photo credit: Tumisu on Pixabay.

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Race May Hinder Appropriate Diagnosis and Treatment for Early-Onset CRC

Systemic racism remains an impediment  for the progress of public health in the U.S. Racial disparities continue to reduce access to quality healthcare in the country, as was confirmed by a recently published study. 

The study, published in the Journal of Clinical Oncology (JCO), found that young Black individuals (18-49 years) in the U.S. diagnosed with colorectal cancer (CRC) have a higher death rate than their White counterparts. The authors suggest that young Black patients with CRC are less likely to receive timely and guideline-concordant care (guideline-concordant is the minimal treatment patients should receive according to the National Comprehensive Cancer Network standards), which may be responsible for the increased mortality in that population. Specifically, the study found that Black CRC patients had longer times to receive adjuvant chemotherapy for colon cancer and neoadjuvant chemoradiation for rectal cancer compared to White patients. 

Racial disparity has a long and profound history in the U.S., affecting everything from the housing sector to the criminal justice system to the healthcare system and the economy. But when it comes to healthcare, it becomes even more worrisome and disturbing because the system’s ongoing inequities are impeding the progress made through years of public health effort. As a national goal, the Agency for Healthcare Research and Quality is dedicated to reducing racial disparities in health outcomes across the country. 

Interestingly, the American Cancer Society reports that, with the exception of pancreatic and kidney cancer, Black people had lower survival rates than White people for all cancer types. 

Barriers to CRC Screening and Treatment

Back to the JCO study – the authors found that access to CRC screening is difficult for Black people in the U.S. for a number of reasons, including:

  • Health insurance coverage: Often your health insurance determines the type of healthcare you receive. However, obtaining quality private health insurance is primarily dependent on having a job. But when it comes to employment, a substantial percentage of Black people are disadvantaged. Compared to White people, Black people have the highest unemployment rate in the country and are more likely to work in blue-collar jobs. Consequently, Black individuals have lower rates of private insurance coverage. 
  • Facility type: Black people are more likely to receive treatment at facilities with limited resources and are less likely to have access to high-performing facilities like teaching hospitals and cancer centers with a National Cancer Institute designation. However, research indicates that there could be a 5% reduction in the disparity in the provision of guideline-concordant care if Black and White patients were treated in the same healthcare facilities. 
  • Access to specialists/Lack of diversity in the medical workforce: For Black patients with metastatic CRC, fewer consultations with specialists and subsequent multimodality therapy treatments are provided. Nonetheless, even in cases when the rates of specialist visits are comparable to those of White patients, Black people are less likely to undergo treatment for CRC. A lack of cultural sensitivity and diversity in the medical workforce erodes good patient-provider communication, including the kind and caliber of information that clinicians deliver to patients, and makes the health care system appear less trustworthy. Disparities in patients’ access to high-quality care can be made worse by this, which can result in clinicians making insufficient treatment recommendations and creating obstacles to treatment adherence for patients from marginalized populations.

Over the years, a lot of work has been done to boost access to healthcare and remove barriers that might prevent it. Despite that, racial disparities in healthcare in the U.S. remain. However, no one should be denied access to high-quality healthcare due to the color of their skin or race. More work is needed to eradicate the disparities that Black Americans and other minority races face throughout the country.

 

Emmanuel Olaniyan is a Colorectal Cancer Prevention Intern with the Colon Cancer Foundation.

 

Photo credit: Nathan Dumlao on Unsplash

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Tackling Fresh Food Inequality: Navigating the Landscape of Food Deserts and Nutrition

Nutrition & Colorectal Cancer Prevention Series: Blog 2

The first installment of this blog series provided an overview of the molecular pathways that enable dietary interventions to prevent and reduce the spread of colorectal cancer (CRC) cells in the body. These pathways have laid the foundation for this week’s installment: addressing the systemic barriers that prevent individuals from accessing the nutrition they need to reduce CRC risk. 

Connecting the Dots: Access, Healthy Food, and CRC

The link between food deserts (areas with limited access to low-cost yet nutritious food) and health outcomes is well established. Like most health disparities in the U.S., black, brown, and low-income communities are more likely to live in locations with sparse options for fresh, healthy dietary choices. Individuals living in these food deserts often need to drive an extended distance to access fresh fruits and vegetables, as the options near their residences are canned, frozen, or unavailable. Additionally, food swamps are similarly deficient in healthy nutritional options but are marked by a high ratio of fast food to fresh food options. Lack of proximity to fresh and less processed foods contribute to the social determinants of health and make it far more difficult for individuals in these communities to engage in proactive prevention. 

In an article published in May of this year, researchers explored the epidemiologic links between counties with high food desert and food swamp scores and obesity-related cancer mortality rates. Individuals residing in counties with high food swamp scores were found to have significantly (77%) higher odds of obesity-related cancer mortality. The authors similarly identified a positive dose-response relationship between obesity-related cancer mortality and food desert and swamp scores. 

Improving Access to Fresh Foods in These Communities

While individuals living in these geographic locations have substantial barriers, local organizations can help provide services that bridge the gap. Many local food pantries have developed programs to bring fresh foods to communities in need. Volunteers will pack pre-selected boxes of fresh ingredients and set up a free farmer’s market in a community that lacks access to those ingredients, eliminating the transportation barrier and making dietary prevention, or the process of maintaining a balanced and nutritious diet to prevent disease, a more accessible goal. 

Feeding America has an online tool that locates mobile food pantries with a click and a zip code. Local food pantries may also provide delivery services to elderly or disabled individuals, so check in with your local organization to learn more!

Emma Edwards is a Colorectal Cancer Prevention Intern with the Colon Cancer Foundation.

Picture credit OpenClipart-Vectors from Pixabay.

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Serving the Underserved: Transportation, Physician Access for CRC Prevention

By Deepthi Nishi Velamuri

Colorectal cancer (CRC) remains a serious health issue in the U.S. It is the second most common cause of cancer-related deaths in both men and women, and it is the third most frequently diagnosed cancer. An average of 50,000 Americans die from CRC each year. However, CRC is quite treatable if diagnosed early through routine screenings for average- and high-risk adults. The incidence and mortality rates associated with this disease are being reduced through public health initiatives, such as awareness campaigns and improving access to screenings. To prevent and identify CRC in its earliest stages, people must fully comprehend the risk factors, symptoms, and significance of regular screening.

The studies in the infographic below were presented at Digestive Disease Week 2023 and were focused on understanding the factors that impact screening rates for CRC in the U.S. The researchers delved into various aspects such as patient education, healthcare policies, socioeconomic disparities, and the effectiveness of screening methods and aimed to enhance screening efforts, raise awareness, and develop targeted interventions to increase screening rates.

 

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Clinical Decisions Support Systems May Exacerbate Healthcare Disparities

Clinical decision support systems (CDSS) are computer-based applications used to analyze data within electronic health records (EHRs). CDS algorithms are progressively being integrated into healthcare systems to expand patient care. However, research and development in ethical frameworks have uncovered that CDS applications can perpetuate bias in healthcare. A recent EHR quality improvement study has revealed significant differences in family history accessibility, availability, and comprehensiveness based on sex, race and ethnicity, and language preference. These findings propose that historically medically underserved populations are excluded from identification from CDS tools based on family history information, unintentionally reinforcing existing healthcare disparities and potentially creating more disparities in healthcare systems.

 

decision support system

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Dr. Shahnaz Sultan: Pre-Endoscopy COVID-19 Testing Led to Disparities

The Colon Cancer Foundation had the opportunity to speak with Dr. Shahnaz Sultan, MD, MHSC, AGAF, about her research team’s findings that pandemic-related pre-procedure COVID-19 testing caused higher rates of endoscopy cancellations among patients from marginalized populations. A Professor of Medicine in the Division of Gastroenterology, Hepatology, and Nutrition and the Program Director for the Gastroenterology Fellowship Training Program at the University of Minnesota, Dr. Sultan’s research interests are focused on reducing colorectal cancer morbidity and mortality by improving adherence and quality of colonoscopy.

Q: What is the main takeaway you want people to understand from your research?

One of the most important things we want to emphasize is that colorectal cancer [CRC] is a very preventable cancer and there is a lot of high-quality evidence that shows that screening for CRC actually leads to a reduction in associated mortality. We really need to think about CRC screening along a continuum—whether you are doing stool-based testing or you’re getting a colonoscopy, it’s a multi-step process, and at every step, we need to be cognizant about reducing barriers and helping patients complete their CRC screening tests. Adding another step that patients have to complete prior to colonoscopy, such as pre-procedure SARS-CoV2 testing, in addition to completing their bowel prep, following dietary guidelines, finding transportation, and coming in to get a colonoscopy, really makes it that much more challenging. Pre-procedure testing serves as one more step and one more possible barrier in terms of getting people up-to-date with their screening. 

Q: As you were conducting your research, were there any findings that surprised you?

Our objective here was to understand the impact of pre-procedure COVID-19 testing—we wanted to see the magnitude of the impact and who was specifically affected by this additional requirement. When we looked at the canceled outpatient endoscopy procedures in our cohort from March 2021 to September 2021, we were surprised that the overall cancellation rate was so high in terms of getting people to complete their colonoscopy. Among the 574 cancellations, a little under 10% were due to pre-procedure COVID-19 testing requirements, and a good proportion of the remainder, about 51%, were patient-initiated cancellations. There were a lot of additional factors that were potentially holding people back from CRC screening. Additionally, we were surprised that pre-procedure testing was disproportionately affecting certain populations. Persons who self-identified as Black, American Indian, Alaskan Native, or Hispanic were more likely to have testing-related cancellations. 

Dr. Shahnaz Sultan

Q: Of the patients who canceled their colonoscopy, do we know if they went for an alternate form of testing for colorectal cancer, such as stool-based testing?

That’s an interesting question! We do not have that health data within our health system, but you bring up a good point. During the pandemic, a lot of other health systems were shifting gears from colonoscopy to stool-based testing and using programmatic efforts to directly reach out to patients to make sure they were getting some form of CRC screening. 

Q: Healthcare challenges, such as the COVID-19 pandemic, have demonstrated to significantly disrupt CRC screening procedures and participation, especially for medically underserved communities. What steps can be taken or what policies can be implemented in the future to support CRC screening participation and prevent significant disruptions to CRC screening?                                              

There is a lot of ongoing research to understand different barriers we can address or different interventions we can take to improve screening at the population level. We really need a multifaceted or multi-pronged approach to screening. We really need to think about interventions that not only focus on patients, but we also need to target providers, health systems, and community leaders, and think about national and federal policy decisions. I think there are a lot of opportunities to decrease barriers at different levels in terms of getting people to be more up-to-date with screening at a population level.

In terms of policy, one of the things that we have been able to fix recently is this loophole that existed in the past where if a test was done for screening purposes, but polyps were removed, then it was no longer counted as a screening test, and that incurred copayments and additional burdens on patients. I think that has been a real coup for us in the gastroenterology community and overall in terms of helping to support the care of our patients. Also, I think there are a lot of opportunities at the national level to support programmatic efforts to improve screening for populations that are underinsured or don’t have access to care, and I think we need to do more outreach and find ways to include health educators and patient navigators. We need to make sure we are educating patients about the importance of screening and helping address financial or logistical barriers that might serve as additional challenges for patients to overcome.

Continued on Page 2.

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NCCN Policy Summit: Supporting Workplace Needs of Cancer Patients, Survivors

On June 17, 2022, the National Comprehensive Cancer Network (NCCN) held a policy summit to discuss cancer care in the workplace and building a 21st century workplace for patients, survivors, and caretakers.

One of the distinct portions of this summit was a panel on Patients, Survivors, and Caregivers in the Workplace: Contemporary Barriers and Solutions to Achieving Inclusive Workplaces. Panel moderator John Sweetenham, MD, FRCP, FACP, FASCO, Chair, NCCN Board of Directors, and Professor of Medicine, Associate Director of Clinical Affairs, UT Southwestern Simmons Comprehensive Cancer Center, noted that the disproportionate distribution of accommodations due to socioeconomic differences leads to inadequate care and suboptimal outcomes for certain populations.

Rebecca V. Nellis, MPP, Executive Director, Cancer and Careers, shared results from a 2021 Cancer and Careers/Harris Poll Survey, which found that for three-fourths of responders, work helped them cope and aided in their recovery. These statistics show us that we can work towards a healthier workplace environment for cancer patients  and subsequently influence their health outcomes. Lynn Zonakis, BA, BSN, Principal, Zonakis Consulting, former Managing Director of Health Strategy and Resources for Delta Air Lines, shared the strategies employed by Delta for combating the difficulties associated with a cancer diagnosis. “At all levels, I would say that people were very open to disclosure, and that was the vast norm, because in each work unit, at every level, there were multiple cancer survivors or survivorship in family members, so they understood that it was to their benefit to disclose.”

She did elaborate on the associated risks,  citing the example of pilots at risk of losing their jobs when disclosing mental health risks. This can be applied to a cancer diagnosis as well. “At a lot of organizations it can put you at risk. Some people will feel that their job could be vulnerable, and they won’t disclose it, so there’s no one size fits all,” she noted.

Workplace Flexibility for Patients and for Caregivers

Angela Mysliwiec, MD, Senior Medical Director, WellMed, touched on an important aspect of the support process: the caregivers. She spoke about a program at WellMed dedicated to assisting caregivers, who she explained are experiencing the same challenges as the person they’re caring for. “When it comes to work they need flexibility, they need to take care of themselves, they need their mental health cared for, and the organizations themselves who are often ill equipped to manage a person on staff with cancer can often be even more ill equipped to manage the caregiver,” Mysliwiec said.

Randy A. Jones, PhD, RN, FAAN, Professor, Associate Dean for Partner Development and Engagement, and Assistant Director of Community Outreach and Engagement at the University of Virginia, concurred with Mysliwiec. “Caregivers share the anxiety, they share the fatigue, along with some of the patients with cancer that they’re dealing with.” He also made a point about institutions having the resources to empower patients, especially since “people are more aware of these issues, you know people understand that there is an issue between how patients are getting benefits as well as how they may be navigating the system.”

Sweetenham and Nellis closed the panel by highlighting the importance of proactive planning instead of reactive planning. They recommended that organizations should implement workplace flexibility that should be communicated upfront to new employees, and then practice it on a regular basis instead of making adjustments and assumptions as events occur.

Employer Policies Play a Big Role 

Joanna Fawzy Morales, Esq., Chief Executive Officer, Triage Cancer, spoke to the audience about The Policy Landscape to Support Patients, Survivors, and Caregivers at Work. Morales pointed out that employment can be a contributor to financial toxicity in the form of lost wages, employee benefits, and more. She further elaborated on a point that Nellis had made about battling assumptions, saying that “Employers have assumptions about their employees who’ve been diagnosed with cancer and their ability to do their jobs. Health care professionals make a whole lot of assumptions about their patients and whether or not they want to work or they can work.”

Explaining the current and suggested employment rights and accommodations, Morales said that they play a big role in helping patients make educated decisions on next actions. While there is a significant lack of awareness of protections available through the law, there are several gaps that need to be bridged. “There are many opportunities to close those gaps to improve the quality of life of patients and their families and mitigate the financial toxicity of a cancer diagnosis,” she added. She concluded her talk by emphasizing the need to educate employers, health care professionals, and the cancer community.

From informing the employer to the employee to equitable care for patients and their caregivers, this policy summit discussed various aspects of cancer in the workplace, and how we can improve the experience for those involved.

Juhi Patel is a Colorectal Cancer Prevention Intern with the Colon Cancer Foundation.

Image credit: Mohamed Hassan, Pixabay

 

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COVID-19 Testing Prior to Endoscopy Heightened CRC Screening Disparities

Medically underserved communities experience significant health care inequities, including preventive screening for colorectal cancer (CRC) and CRC-related morbidity and mortality. Multilevel barriers to CRC screening and subsequent follow-up create disparities and inequities in individual outcomes. Pandemic-related pre-procedure COVID-19 testing has been shown to cause higher rates of endoscopy cancellations among patients from marginalized populations. This, in addition to financial concerns, patient mistrust, lack of access to specialists and colonoscopy services are just some of the barriers to completion of CRC screening and follow-up procedures. 

CRC Screening Disparities: What’s the Solution?

The fecal immunochemical test (FIT) is one of the most widely used CRC screening methods globally and is an affordable screening tool for studying large populations. FIT detects hidden blood in stool, which can potentially be an early sign of cancer, and is an affordable home-health test with an overall 95% diagnostic accuracy for CRC. However, to be an effective screening tool, each step of the multi-step screening process must be completed: a diagnostic colonoscopy must follow a positive FIT test. Failure to complete the screening process is associated with higher rates of CRC mortality. 

While patient navigation helps with follow-up after a positive FIT test, only one-third of patients complete colonoscopy. Proactive, organized CRC screening involving centralized tracking, reminders, alerts for providers, and culturally competent and tailored messaging for patients are more effective for improving screening rates for White and African American patients. Such tactics have also reduced the differences in screening rates and cancer-specific mortality between White and African American patients. 

The COVID-19 pandemic has disproportionately impacted medically-underserved communities. African American, American Indian/Alaska Natives, and Hispanic populations have been particularly hard hit. COVID-19 testing requirements prior to endoscopy have disproportionately affected medically-underserved communities. 

While COVID-19 testing was a requirement earlier in the pandemic, the American Gastroenterological Association updated its guidelines as our understanding of viral transmission improved, vaccines became available, and viral transmission during endoscopy was found to be minimal. However, multiple institutions have continued to require pre-procedure COVID-19 testing prior to medical procedure—including endoscopy—which has led to high rates of endoscopy cancellations among individuals from marginalized populations. Pre-procedure testing may have introduced an additional barrier to care and increased existing disparities in health care and health outcomes. 

Recommendations for Eliminating Screening Barriers

Researchers have recommended the following strategies to reduce the impact of disparities due to COVID-19 testing:

  • Mailing SARS-CoV2 testing kits to endoscopy patients several weeks pre-procedure
  • Offering rapid testing to patients on the day of the procedure
  • Offering an opt-out option for testing due to hardships, such as the inability to schedule testing due to work schedules, difficulties finding transportation, or the need for childcare

Multilevel barriers to CRC screening and appropriate follow-up after screening create disparities and inequities in health care outcomes. Healthcare systems must collaborate with healthcare providers, community leaders, and social service representatives to improve access to care and guarantee equitable health care for all.  

 

Sahar Alam is a Colon Cancer Prevention Intern with the Colon Cancer Foundation.

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Researchers Focus on Equity to Improve Colorectal Cancer Screening Rates

A recent article published in the New England Journal of Medicine stressed the need to make health equity our national priority. The researchers identified significant differences in the screening rates between black and white Americans. Additionally, they found that improvements in screening rates, more timely treatments, as well as earlier detection of cancer significantly improved cancer outcomes. 

The researchers evaluated the association between rates of colorectal cancer screening as well as age-standardized incidence rates between 2000 to 2019 among non-Hispanic black (hereafter black) and non-Hispanic white (hereafter white) persons 50 to 75 years of age who were members of the Kaiser Permanente Northern California (KPNC) health plan. The researchers then conducted follow-ups with participants until the age of 79 years to investigate screening patterns as well as incidence rates.

Between the years 2006 and 2008, KPNC began a population-based colorectal cancer screening program that utilized proactive mail-in fecal tests and colonoscopies upon request. The study found that screening rates for black individuals increased from 42% in 2000 to 80% in 2019 and those for white individuals increased from 40% in 2000 to 83% in 2019. The study also investigated colorectal cancer-specific mortality in both groups. Among black populations, there were 54 deaths per 100,000 in 2007, which dropped to 21 cases per 100,000 in 2019. Among white populations, colorectal cancer-specific mortality decreased from 33 per 100,00 in 2007 to 20 per 100,000 in 2019. 

After evaluating the yearly trends, the researchers were able to hypothesize that one of the major reasons for this drop in incidence as well as mortality from colorectal cancer in both black and white individuals was the sustained delivery strategies across the care continuum, including advancements in prevention methods, earlier detection of treatable cancers, and more timely treatments. Overall, the results of this study showed that it is possible to increase screening and decrease the incidence and mortality of colorectal cancer when the correct methods are implemented. 

Abigail Parker is a Colorectal Cancer Prevention Intern with the Colon Cancer Foundation.

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