The Colon Cancer Foundation’s Lakshmi Yeturu sat down (virtually!) with Dr. Brian Dooreck to find out more about his initiative to arm newly diagnosed colorectal cancer patients and caregivers with substantial resources as they bravely face their diagnosis and treatment. Part I of this interview can be found here.
Can you tell us more about the mission of the Colorectal Cancer Provider Outreach Program (CRC POP) ?
The premise is quite simple. Provide our patients with guidance and direction to the support that is available to them at the time of diagnosis at the bedside.
If a newly diagnosed patient approached you for support, how would you describe CRC POP to them?
The Colorectal Cancer Provider Outreach Program is designed to provide you access to nationally available support organizations, their websites and phone numbers, to call them, connect with them, engage with them, lean into them, pull from them, share with them, and get whatever support you and your family need. There’s no monetization, there’s no hope, there’s no sale, and there’s no email being collected—there’s nothing more than just providing direction to you at the time of diagnosis to reinforce that you’re not alone and to provide you with the support you need here and now.
What kind of resources do you look to arm them with?
- For their mobile phone, texting the word ‘COLON’ to 484848
- All our providers have the ability to put a PDF on their website
- All our providers have the ability to put an order in their electronic medical records
And that’s all that’s needed…there’s not much more to it. The providers are being given the simplest of tools to lead patients to a centralized web page, centralized PDF, and a centralized text number to give patients direction.
Does CRC POP seek to provide resources for caregivers and loved ones as well?
As I mentioned earlier, of the 150,000 people diagnosed with colon cancer every year, every diagnosis has a family member or a support system around them. So, if you take that number and extrapolate it out, every person that is affected may affect, on average, three or five or six other people. Do the math and that number becomes a lot more than 150,000. We expect that very soon, the support that we are providing at the time of diagnosis can not only help the patient and their family but also promote screening and prevention for those organizations that have preventive screening programs
How has CRC POP progressed since it was founded? In your opinion do you think patients will seek POP as a resource for comfort or information following their diagnosis?
his idea was conceived in May or June of 2020; we had initial calls in July, drafted it and we launched on October 1st. We are now in a position where CRC POP is set up, it is up and running and we are in the process of sharing it with GI providers through social media.
Our goals are to connect with the three GI Associations, to find tools through them, through the National Colorectal Cancer Roundtable and the American Cancer Society. In addition, we want to connect with endoscopy centers. I am all about finding the outcomes and results we need to get to the providers quicker, faster, and easier.
I’m not going to be cold calling. Instead, we have started by getting about 10 of the largest groups aware of this and signed onto it in principle, including Gastro Health and GI Alliance. About 1200 GI doctors represented by those 10 groups now know what we’re doing and it’s now about ‘How do you utilize what is there?’
Personally, do you associate the terms ‘comfort’ or ‘information’ with the aims of CRC POP? Or is there another term you think better resonates the mission of CRC POP?
The missions are for me clearly ‘reassurance and support’. I would say reassurance and support at the time of diagnosis, provided by the doctor to the patient.
Do you feel like this program will make a real-world impact on the scale of patient information access?
My goal is to measure it every month and to know how many clicks, how many calls each of these organizations are getting because you’re suddenly taking the active, potential user of a resource and providing them with the information in their hands. If it helps one person feel more reassured, more secure and they get the information they need then it is serving its purpose. That’s my goal, to have increased utilization month to month to month by the 14,000 gastroenterologists in the country.
In short, your goal is to measure how this is impacting the patients that you, your partners, or the gastroenterologists that have signed on to this program are diagnosing, and to eventually put this out there so every single board-certified gastroenterologist who can diagnose colorectal cancer introduces their newly diagnosed patient to CRC POP?
Ideally, that would be wonderful because we’re diagnosing the cancer and we’re sending the patient home. And this is how it goes: we diagnose someone and 10 minutes later I’m doing a procedure on another patient and that person is home in a cold panic, not understanding, clouded, diagnosed, Googling ‘Am I going to die from colon cancer?’ What I’m doing is providing reassurance at the time of diagnosis that gives them the guidance they want and need through whatever resources they choose to tap into. What the organizations do, what happens from that point of contact is between the organizations and the patient or the person reaching out. What I’m doing is providing people the direction.
So, what you are saying is that you are being there for the patient even when you’re physically not there for them after they’ve been diagnosed?
Yes, correct, I’ll see them in two weeks but in that two-week window, a lot of things need to be done. They need to get labs, they need to see a surgeon, they need to see an oncologist, they need to get a CAT scan. But besides that, I’m not there for them. They will call my office maybe but imagine having a 24/7, 1-800 number to call to speak to someone, to have a group to join, a community to have. Have their questions answered on things like ‘Am I going to die?’
In these cases, people’s world is thrown upside down, their blueprints in life are ripped up, and that’s kind of what we are trying to provide support for in the simplest of terms. Leveraging free technology and helping people.
Lastly, I just wanted to conclude on an open-ended note. For those within the non-scientific/medical community, do you think that this program will pave the avenue to improve the scale of information made available to patients after they are diagnosed?
I mean the level of information available from these organizations is huge and the level of information they provide is not just clinical, emotional, financial, academic, research, or trial-based. The level of advocacy, lobbying, or opportunity they can provide people is probably so individualized that it’s not measurable. So, I think that the potential of what happens from the contact made by a person—be it a patient, their family member, or their caregiver—with any of these organizations is truly dependent on what they want or need from it and what they express their needs to be. I can almost guarantee you that any organization that is not able to provide that assistance or that direction will say, ‘Listen, we’re really good at this we are excellent at that, but we don’t know anything about that. You know who does? This organization. Ask for this person, here’s the phone number.’ That’s what will happen.
If so, could you describe why it is imperative to support the large-scale sharing of medical information that ensures that all patients are adequately informed about their diagnoses?
Well, I wouldn’t say it’s imperative in the sense that the medical care is not going to get affected in theory. But in terms of imperative to providing the highest quality of care, no doubt. Imperative to providing the most empathetic role as a provider and position, no doubt. Imperative in improving people’s quality of life and sharing something to help someone else at a level that’s not technical, cold, calculated, or that can be measured in a medical chart. That’s imperative. The role of this is imperative because it’s not us who’s being told we have colon cancer and I always say it could be one in a million but you’re that one it’s a 100%.
That’s where I see the role of this program and the reality is it just takes a little courage and a little change in a little shift in mindset of the gastroenterologist to get a new part of their working algorithm or new part of their process into play. You get into their knee jerk response: I diagnose colon cancer, I tell the patient to text 484848, type in the words ‘COLON’, remind them resources are available right now.
What Should Patients Know About Colorectal Cancer Screening?
March is National Colorectal Cancer Awareness Month—an observance of patients, survivors, caregivers, and advocates to educate their communities about the disease. It is also an opportune time to promote awareness about the importance of screening, prevention, and treatment.
The third most common cancer diagnosed in the US, colorectal cancer (CRC) is one of the leading causes of morbidity and mortality worldwide. Although CRC incidence rates have declined in the U.S., disease burden remains high. About 19 million colonoscopies were done in the USA in 2017 and the number seems to be increasing primarily due to various screening programs. The U.S. Preventive Services Task Force currently recommends average-risk adults to begin screening at the age of 50 years, while the American Cancer Society suggests starting earlier, at 45 years.
Screening tests can successfully recognize precancerous polyps and can help catch early-stage colon tumors. Numerous screening options are currently available and your doctor can help you choose the right test:
Stool-based tests:
Blood-based tests:
Structural Tests:
Screening for CRC should be offered to those older than 50 years as well those who have a family history of CRC and/or predisposing conditions. Patients should discuss their choice of screening test with their doctor, depending on their situation and preferences. For example, screening tests such as FIT and FS are cost-effective, yet decrease the risk of CRC.
Early detection of CRC can help improve both response to treatment and survival!
Public Relations and Community Engagement Intern
Full Job Description
The Colon Cancer Foundation® is seeking a driven Public Relations Intern with a passion to reducing colorectal cancer incidence and death. Candidates should be extremely organized and adept at multitasking; the ideal candidate is a self-starter with a positive and collaborative attitude to join a dynamic and growing organization. We are offering school credit for this internship—you MUST be currently enrolled in a college/ university program to apply.
Day-to-day responsibilities include, but are not limited to:
Candidate will have the opportunity to broaden their knowledge of public relations while assisting the following:
Disparity Among Young Colorectal Cancer Patients Seeking Genetic Counseling
Colorectal cancer (CRC) is the leading gastrointestinal neoplasia, which has historically been known to primarily affect individuals over 50 years of age, and screening is currently recommended for those 50 and older. This might soon change to 45 years and older. While CRC incidence has been decreasing among individuals older than 55 years, young-onset CRC has shown an opposite trend. From 2000 to 2017, the incidence rates of young adults with CRC has increased, particularly among those aged 40-49 years. Evidence suggests a discrepancy among racial and ethnic minorities, markedly amidst those who are of non-Hispanic and African American descent.
About 20% of hereditary colon cancer syndromes are prevalent in young adults with CRC, which makes accessibility to genetic testing of utmost importance to reduce future development of the disease. Despite the need for overall accessibility, ethnic and racial groups are disparately referred to genetic counseling services.
A study conducted at UT Southwestern Medical Center and Parkland Health and Hospital System assessed 385 young adults between the ages of 18-49 years old with colorectal adenocarcinoma. The study measured the following outcomes:
The study determined that 50% (n=225) of patients with young-onset CRC received a referral for genetic counseling services. Nonetheless, it was reported that a smaller portion of African American (n=49) patients were referred to receive genetic counseling as opposed to Hispanic patients (n=116). A downward trend was consistently noticed in African American patients from being referred to and attending appointments. Many patients report that they did not attend an appointment because they either missed it or never scheduled it. The most common reasons for not receiving the genetic test were the inability to afford the cost, not receiving a referral to genetic counseling services, or the patient not returning their saliva sample.
Similar trends were reported among 1,647 African American women with breast cancer <50 years old who were enrolled in the Florida State Cancer Registry a year after their diagnosis. A population-based study was conducted which suggested that roughly 50% of these women were referred to and/or had access to genetic counseling services, even though the national guidelines specify that all patients should be referred. Likewise, several studies on ovarian cancers report similar disparities which need to be addressed.
All patients diagnosed with young-onset CRC should be referred to or have access to genetic counseling, regardless of their racial or ethnic background. Genetic counseling services can be of help in guiding and managing treatments among those diagnosed with CRC.
Should Financial Hardship be a Quality Care Measure After a Cancer Diagnosis?
Cancer is one of the most expensive conditions to treat worldwide. Financial stress and hardship after a cancer diagnosis is a well-documented fact in the U.S. Cancer patients spend more out-of-pocket for medical care and treatment than their counterparts without cancer, adding to their financial hardship. In addition to leaving patients and their families with debt and potential bankruptcy, these financial stressors also compound negative physical health effects.
Despite this, screening for financial hardships is not currently a part of clinical practice, and discussions around patient financial stressors occur infrequently in clinics. To address these challenges, screening for financial hardship after a diagnosis should be introduced to improve cancer patients’ quality of life during treatment and survivorship.
The Financial Burden of Cancer Patients and Survivors
Dr. Robin Yabroff of the American Cancer Society said in an interview that cancer survivors experience consistent financial stress related to their diagnosis and post-treatment—40% of Americans cannot afford an unexpected expense over $400. In fact, over 50% of cancer survivors report being stressed about paying high medical bills or have delayed medical care due to high costs. Given that financial burden is strongly correlated with gap in insurance programs, unsurprisingly cancer survivors aged between 18-64 are more likely to experience financial stress relative to non-cancer survivors. With many new drugs and medical devices priced at $100,000 or higher, financial hardship has increased exponentially for cancer patients. Moreover, health insurers are constantly shifting care costs to patients by introducing higher deductibles, copayments, and coinsurance. To top all of this, a cancer diagnosis indefinitely and negatively impacts employment, resulting in loss of income and employment-sponsored health insurances in some cases.
Consequently, patients with cancer and their families experience ‘financial toxicity’, a term associated with hardships with paying medical expenses, psychological stress about affording to pay, and delaying or forgoing medical care due to costs. A recent study co-authored by Dr. Yabroff and Dr. Yousuf Zafar in CA: A Cancer Journal for Clinicians, highlights three main factors contributing to financial hardship as the rising cost of cancer treatments:
In addition, newer radiation and surgical oncology treatments are expensive. A simultaneous rise in the number of uninsured and underinsured patients and an increased prevalence of high-deductible and copayment health insurance options complicate matters.
Need for Financial Hardship Screening After Cancer Diagnoses
Financial hardship negatively impacts a cancer patient’s mental health, physical willpower, and financial wellbeing as seen through increased debt, savings depletions, and filing for bankruptcy protection. This in turn can affect treatment adherence through forgone or delayed medical care, resulting in reduced survival. The higher the out-of-pocket costs for cancer therapeutics, the higher the risk for delayed treatment initiation or abandonment, risking early mortality and/or diminished quality of life.
A pilot study by Shankaran et al., revealed that introducing financial navigation programs could serve to lower anxiety surrounding the cost of medical expenditures, even if the actual cost remains the same. Training programs infinancial navigation provided by hospital staff can decrease and/or optimize patient out-of-pocket spending while reducing losses to health care facilities. However, a real-time online survey of oncology navigators found that 50% identified lack of resources as a barrier for getting financial assistance, highlighting the considerable room for improvement when connecting patients to the resources they need.
Treatment-related financial toxicity has been addressed by various professional outlets, patient-advocacy organizations, and the National Cancer Institute (NCI). For instance, the American Society of Clinical Oncologysuggests that cancer treatment providers should discuss treatment costs with their patients. Other organizations, including the National Academies of Sciences, Engineering, and Medicine and the President’s Cancer Panel recommend addressing the high costs of cancer care. While a large majority of NCI-designated cancer centers conduct some version of financial screening, only a small fraction actively follow-up on the effectiveness of the screen and connecting patients to financial resources. The collective research in this space highlights the need for implementing financial hardship screening and mitigation after cancer diagnoses to improve patients’ quality of life during and after treatment.
Conclusions
The convergence of increasingly high-cost cancer care and treatment options, lack of health insurance or underinsurance, high out-of-pocket costs, and widening disparities in the ability to cover medical expenses or access quality medical care, provide a strong argument for the implementation of financial hardship screening for cancer patients and their loved ones along with access to suitable financial resources.
The Colon Cancer Foundation provides information on financial assistance programs that patients can access.
A Closer Look at Symptom Management During Chemotherapy Treatment
Much of the illness trajectory in cancer patients is strongly associated with symptom management during—and maybe even years after—chemotherapy treatment. Though chemotherapy drugs are the more common mode of cancer treatment, along with surgery and radiation, patients may experience side effects associated with their quality of life.
According to a study published by the Paediatrics and Child Health Journal, supportive care during intensive chemotherapy is credited with improvements in overall morbidity and mortality rates in adults and children. Symptom and pain management may be classified as supportive care for patients in active treatment. While chemotherapy-related side effects can be anticipated, it is rather challenging to predict if the effects will be mild, moderate, or severe. Of the 236 cancer patients studied in the article, the effects ranged sporadically and were individually unique.
Supportive care methods and recommendations were addressed during a recent CURE Educated Patient Metastatic Colorectal Cancer Webinar hosted by speakers Nina N. Grenon, DNP, AOCN; Amber S. Norton, RN, BSN, OCN; and Kelley A. Rone, APRN, BSN. Speaking from their clinical and patient experiences, the care providers agreed that chemotherapy treatment may look different on a day-to-day basis, but the key, according to Ms. Grenon is “to make adequate adjustments” and to “dose adjust, rather than hold out from continuing treatment.” The expert panelists encouraged patients to communicate as much as they can with their providers, so that dose adjustments, paint management, or overall symptom management can happen early, rather than letting it get to the point where their cancer treatment needs to be paused.
Appetite suppression and fatigue are the most common side effects of a chemotherapy regimen, and the research article emphasizes that this can coincide with other symptoms such as nausea or vomiting, which is typically experienced by almost half the patients receiving chemotherapy.
The panelists noted that appetite suppression and fatigue directly correlate with each other; if a patient does not eat, then they will be fatigued or if a patient is fatigued then they will not want to eat. In order to break this cycle, they recommend:
Most importantly, patience is a crucial element to any treatment regimen. Encouraging the patient to eat whatever they can throughout the day is a great place to start. “You don’t have to eat three meals a day…eat what you can throughout the day, even if you just eat small bites all day long, at least you’re getting something opposed to nothing,” Norton reassures. With that, following up with a nutritionist and maintaining communication with your provider can make all the difference. Having a holistic approach to care rather than isolating focus on specific symptoms tends to provide a less challenging segway into survivorship and healing.
Assessment and identification of sources of distress in cancer patients provide an opportunity to improve quality of life during care and restoration of dignity. Adequate communication amongst the patient’s care team will allow the patient to make good progress and respond well to the primary treatment, while also ensuring that their quality of life is maintained.
Colon Cancer Foundation to Provide CRC Screening Kits to the Underserved and Uninsured
Can you support the Colon Cancer Foundation achieve its goal of distributing 10,000 CRC screening kits to the underserved and underinsured? You can easily donate toward this campaign here.
Preventive colorectal cancer (CRC) screening has always been a struggle in the U.S. According to the CDC, only about 69% of U.S. adults were up-to-date on their CRC screening in 2018. When combined with the restrictions and safety concerns raised by the SARS-CoV-2 pandemic, 2020 saw a major dip in the number of average-risk adults going in for a colonoscopy, which is the most common CRC screening and surveillance tool in the U.S.
During the early months of the pandemic (March-April 2020), hospitals and clinics decided to reduce in-person visits and halt elective procedures so they could divert their clinical staff toward managing the surge in COVID-19 patients. This led to a dramatic drop in routine preventive screenings, including screening colonoscopy. Additionally, those who needed a follow-up colonoscopy to confirm findings from an abnormal fecal immunochemical test (FIT) test could not come in to receive those, which further delayed diagnosis among these high-risk patients.
The San Francisco Health Network, for example, reported a 70% decrease in the total number of primary care in-person visits between February and May 2020, which led to a big drop in CRC screening tests: FIT tests reduced by about 85% and colonoscopy by about 90%. The authors predicted that a persistent decrease through early June could lead to 19,000 fewer CRC diagnoses and 4,000 excess deaths nationally as a direct impact of COVID-19.
Statistics from the American Cancer Society confirmed a 90% drop in colonoscopies due to the pandemic by April 2020, compared to two months earlier. Overall, they predict 1.75 million fewer colonoscopies were conducted between March and June 2020, which could have delayed CRC diagnosis in 18,800 patients and will lead to 4,500 excess deaths by 2030.
Combine that with the fact that lack of insurance, or underinsurance, remains a significant problem in the U.S. Statistics released from an August 2020 report from The Commonwealth Fund showed that in the first half of 2020:
Unemployment related to the COVID-19 pandemic may have further exacerbated insurance coverage in the nation and created health access issues.
The backlog of CRC screening will create a number of unprecedented challenges and will force healthcare systems to adapt and adopt new protocols. Among its many recommendations to resume CRC screening, the National Colorectal Cancer Roundtable recommends offering at-home stool-based testing, such as the FIT test, as a safe and equally effective alternative.
With this in mind, the Colon Cancer Foundation has set a goal of helping provide 10,000 CRC screenings for people from the underserved and underinsured community in 2021. We will be working through industry partnerships, diagnostic companies, and retailers to provide free screenings—we need your support to accomplish this goal. For every $35 you donate, we will be able to provide one screening FIT test kit to the underserved and underinsured community.
Can you support the Colon Cancer Foundation achieve its goal of distributing 10,000 CRC screening kits to the underserved and underinsured? You can easily donate toward this campaign here.
CMS’ Most Favored Nation Rule Stopped for Now
A seven-year model proposed by the Center for Medicare & Medicaid Services (CMS) has been temporarily restrained following multiple lawsuits filed by pharmaceutical corporations and physician organizations. The Most Favored Nation (MFN) model, which was scheduled to go live on January 1, 2021, is now stalled.
The CMS Innovation Center announced the mandatory MFN model on November 20, 2020, to test whether reimbursing care providers for Medicare Part B drugs and biologicals (these are drugs administered in a doctor’s office or at an infusion center) at rates that match international prices would reduce the nation’s health care spending. This would also meet the requirements of President Trump’s Executive Order on lowering drug prices for U.S. patients.
The model has the following key payment structure:
This nationwide mandatory model requires participation by all providers and suppliers that receive Medicare Part B fee-for-service payments for the 50 drugs currently included in this model, chosen based on annual spending in 2019 and expected to be updated annually.
Several physician organizations have strongly denounced this rule and filed lawsuits that stopped CMS from implementing the MFN model at the beginning of January 2021. This includes a multi-organization lawsuit filed by the Association of Community Cancer Centers (ACCC) in collaboration with the Pharmaceutical Research and Manufacturers of America, the Global Colon Cancer Association, and the National Infusion Center Association, asserting that CMS has exceeded its statutory authority with implementing this model while simultaneously failing to follow appropriate rulemaking procedures.
“This a temporary victory for cancer patients and providers yet we still have a way to go. It is important that any policies enacted don’t limit our ability to serve patients and their families. Poorly designed policies such as MFN can have devastating impacts on patients, particular those in rural and underserved areas who are vulnerable to changes that will limit the care they receive,” said ACCC President Dr. Randall A. Oyer, in a statement.
Medicaid Expansion Under the Affordable Care Act Was Good News for Colorectal Cancer Care
Medicaid expansion under the Affordable Care Act (ACA) in 2014 has had a notable impact on the diagnoses of early stage colorectal cancer compared to non-expansion states, according to a recent study published in the Journal of American College of Surgeons (JACS). In addition to cancer diagnoses, changes in cancer staging, surgical outcomes, and decisions regarding treatment all saw a positive effect of Medicaid expansion.
The study included Medicaid and uninsured patients listed in the National Cancer Database before the expansion (2011-2012) as well as post expansion (2015-2016). Specifically, the study analyzed 4,438 patients who resided in 19 states that have implemented the expansion as well as 6,017 patients who resided in 19 non-expansion states. Comparatively, patients in states that had expanded Medicaid access saw a multitude of benefits including:
Expansion in all-but 12 states has allowed for more low-income patients to receive crucial public health screenings including colonoscopies, which is one of the screening methods that detects colorectal cancer. The 12 states that did not adopt the expansion include: Alabama, Florida, Georgia, Kansas, Mississippi, North Carolina, South Carolina, South Dakota, Tennessee, Texas, Wisconsin, and Wyoming. People who were most impacted by the expansion, according to the study, were in the 40 to 64 age group without health insurance or who had Medicaid.
According to the American Cancer Society (ACS), having adequate access to health care and screenings is especially crucial for colorectal cancer, the fourth most common cancer in the U.S, as research has shown that rates of diagnoses amongst people below the age of 65 are increasing. The ACS also reports that one in three people who should receive regular screenings do not, due to lack of insurance or barriers to health care access.
The expansion of the ACA is a step in the right direction for increasing screenings. However, the positive impact of the ACA doesn’t stop with increased screening—-it improves surgical outcomes and limits invasive procedures, as well as limits the number of cases of advanced colorectal cancer.
Doctors assure patients that colorectal cancer is relatively manageable and treatable if detected early. Dr. Samer T. Tohme, surgical oncologist at University of Pittsburgh Medical Center (UPMC) Hillman Cancer Center and one of the lead authors of the current JACS study, says, “Studies show that patients who are diagnosed with cancer at an earlier stage are more likely to have better treatment options, improved quality of care, and longer survival.” Once diagnosed at an early stage, the patient may be spared the tough job of making significant decisions regarding their treatment plan.
Advanced stages of colorectal cancer are associated with increased length of treatment, cost, distance traveled, and overall complexity of care, according to the research study. Medicaid expansion gives a large population of people a chance to avoid many of the stressors associated with dealing with an advanced chronic illness.
Patients in expansion states diagnosed with advanced colorectal cancer have access to palliative care services if needed. Palliative care is an essential element of health care since it provides people with the dignity of symptom relief and comfort during end-stages of a terminal illness.
Overall, the ACA has provided a key framework for the future of oncology care and prevention in the U.S. According to Dr. Richard S. Hoen, surgical oncology fellow at UPMC and a co-author of the study, “Studies like ours are building an increasing body of network that suggests the Affordable Care Act and Medicaid expansion are improving health care access and treatment for cancer patients.”
The advances that the ACA expansion was able to deliver to colorectal cancer patients across the U.S. are also improving overall cancer care while reducing morbidity and mortality rates. To evaluate your risk for colorectal cancer or obtain a colonoscopy, contact your primary care provider.
Increased Risk of CRC in Patients With Slow-Transit Constipation
Slow-transit constipation (STC) is reported to occur in 15-30% of people in the U.S. The most widely accepted definition of STC is two or fewer bowel movements per week or straining at stool more than 25% of the time. Research continues to point to STC as a risk factor for colorectal cancer (CRC).
A study published in 2020 that looked at 2,165 patients (median age 54 years), found that the cumulative probability of CRC was 0.2% 5 years after STC diagnosis and 0.4% 10 years after STC diagnosis. This was not significantly different (p=0.575) than among those without STC diagnosis. However, this may be due to the small number of patients (5) who were diagnosed with CRC.
Although the authors of the 2020 study did not find a significant difference among those with and without STC diagnosis, it is well established that STC increases CRC risk. Gurérin et al. in their 2014 study of over 100,000 patients identified a statistically significant risk of CRC among those with STC:
Current management options for STC range from dietary counseling, pharmacological therapy, and surgery.
While the etiology of STC remains unclear, there is increasing evidence that it is caused by an imbalance in the gut microbiome. Zhang et al. in their 2021 review published in Gastroenterology Report found that gut microbiota may play a major role in modulating colonic motility, secretion, and absorption. However, there is still much research needed to understand how the gut microbiome modulates movement of fecal matter through the small intestine and colon.
Conversations about the role of the gut microbiome in CRC development were a part of the Early-Age Onset Colorectal Cancer Summit held by the Colon Cancer Foundation in May 2022.
Gargi Patel is a Colon Cancer Prevention Intern with the Colon Cancer Foundation.
In Conversation With Dr. Dooreck: Colorectal Cancer Provider Outreach Program: Part II
The Colon Cancer Foundation’s Lakshmi Yeturu sat down (virtually!) with Dr. Brian Dooreck to find out more about his initiative to arm newly diagnosed colorectal cancer patients and caregivers with substantial resources as they bravely face their diagnosis and treatment. Part I of this interview can be found here.
Can you tell us more about the mission of the Colorectal Cancer Provider Outreach Program (CRC POP) ?
The premise is quite simple. Provide our patients with guidance and direction to the support that is available to them at the time of diagnosis at the bedside.
If a newly diagnosed patient approached you for support, how would you describe CRC POP to them?
The Colorectal Cancer Provider Outreach Program is designed to provide you access to nationally available support organizations, their websites and phone numbers, to call them, connect with them, engage with them, lean into them, pull from them, share with them, and get whatever support you and your family need. There’s no monetization, there’s no hope, there’s no sale, and there’s no email being collected—there’s nothing more than just providing direction to you at the time of diagnosis to reinforce that you’re not alone and to provide you with the support you need here and now.
What kind of resources do you look to arm them with?
And that’s all that’s needed…there’s not much more to it. The providers are being given the simplest of tools to lead patients to a centralized web page, centralized PDF, and a centralized text number to give patients direction.
Does CRC POP seek to provide resources for caregivers and loved ones as well?
As I mentioned earlier, of the 150,000 people diagnosed with colon cancer every year, every diagnosis has a family member or a support system around them. So, if you take that number and extrapolate it out, every person that is affected may affect, on average, three or five or six other people. Do the math and that number becomes a lot more than 150,000. We expect that very soon, the support that we are providing at the time of diagnosis can not only help the patient and their family but also promote screening and prevention for those organizations that have preventive screening programs
How has CRC POP progressed since it was founded? In your opinion do you think patients will seek POP as a resource for comfort or information following their diagnosis?
his idea was conceived in May or June of 2020; we had initial calls in July, drafted it and we launched on October 1st. We are now in a position where CRC POP is set up, it is up and running and we are in the process of sharing it with GI providers through social media.
Our goals are to connect with the three GI Associations, to find tools through them, through the National Colorectal Cancer Roundtable and the American Cancer Society. In addition, we want to connect with endoscopy centers. I am all about finding the outcomes and results we need to get to the providers quicker, faster, and easier.
I’m not going to be cold calling. Instead, we have started by getting about 10 of the largest groups aware of this and signed onto it in principle, including Gastro Health and GI Alliance. About 1200 GI doctors represented by those 10 groups now know what we’re doing and it’s now about ‘How do you utilize what is there?’
Personally, do you associate the terms ‘comfort’ or ‘information’ with the aims of CRC POP? Or is there another term you think better resonates the mission of CRC POP?
The missions are for me clearly ‘reassurance and support’. I would say reassurance and support at the time of diagnosis, provided by the doctor to the patient.
Do you feel like this program will make a real-world impact on the scale of patient information access?
My goal is to measure it every month and to know how many clicks, how many calls each of these organizations are getting because you’re suddenly taking the active, potential user of a resource and providing them with the information in their hands. If it helps one person feel more reassured, more secure and they get the information they need then it is serving its purpose. That’s my goal, to have increased utilization month to month to month by the 14,000 gastroenterologists in the country.
In short, your goal is to measure how this is impacting the patients that you, your partners, or the gastroenterologists that have signed on to this program are diagnosing, and to eventually put this out there so every single board-certified gastroenterologist who can diagnose colorectal cancer introduces their newly diagnosed patient to CRC POP?
Ideally, that would be wonderful because we’re diagnosing the cancer and we’re sending the patient home. And this is how it goes: we diagnose someone and 10 minutes later I’m doing a procedure on another patient and that person is home in a cold panic, not understanding, clouded, diagnosed, Googling ‘Am I going to die from colon cancer?’ What I’m doing is providing reassurance at the time of diagnosis that gives them the guidance they want and need through whatever resources they choose to tap into. What the organizations do, what happens from that point of contact is between the organizations and the patient or the person reaching out. What I’m doing is providing people the direction.
So, what you are saying is that you are being there for the patient even when you’re physically not there for them after they’ve been diagnosed?
Yes, correct, I’ll see them in two weeks but in that two-week window, a lot of things need to be done. They need to get labs, they need to see a surgeon, they need to see an oncologist, they need to get a CAT scan. But besides that, I’m not there for them. They will call my office maybe but imagine having a 24/7, 1-800 number to call to speak to someone, to have a group to join, a community to have. Have their questions answered on things like ‘Am I going to die?’
In these cases, people’s world is thrown upside down, their blueprints in life are ripped up, and that’s kind of what we are trying to provide support for in the simplest of terms. Leveraging free technology and helping people.
Lastly, I just wanted to conclude on an open-ended note. For those within the non-scientific/medical community, do you think that this program will pave the avenue to improve the scale of information made available to patients after they are diagnosed?
I mean the level of information available from these organizations is huge and the level of information they provide is not just clinical, emotional, financial, academic, research, or trial-based. The level of advocacy, lobbying, or opportunity they can provide people is probably so individualized that it’s not measurable. So, I think that the potential of what happens from the contact made by a person—be it a patient, their family member, or their caregiver—with any of these organizations is truly dependent on what they want or need from it and what they express their needs to be. I can almost guarantee you that any organization that is not able to provide that assistance or that direction will say, ‘Listen, we’re really good at this we are excellent at that, but we don’t know anything about that. You know who does? This organization. Ask for this person, here’s the phone number.’ That’s what will happen.
If so, could you describe why it is imperative to support the large-scale sharing of medical information that ensures that all patients are adequately informed about their diagnoses?
Well, I wouldn’t say it’s imperative in the sense that the medical care is not going to get affected in theory. But in terms of imperative to providing the highest quality of care, no doubt. Imperative to providing the most empathetic role as a provider and position, no doubt. Imperative in improving people’s quality of life and sharing something to help someone else at a level that’s not technical, cold, calculated, or that can be measured in a medical chart. That’s imperative. The role of this is imperative because it’s not us who’s being told we have colon cancer and I always say it could be one in a million but you’re that one it’s a 100%.
That’s where I see the role of this program and the reality is it just takes a little courage and a little change in a little shift in mindset of the gastroenterologist to get a new part of their working algorithm or new part of their process into play. You get into their knee jerk response: I diagnose colon cancer, I tell the patient to text 484848, type in the words ‘COLON’, remind them resources are available right now.