The Urgent Need for Patient-Centered Care in Colorectal Cancer: Perspectives of a Healthcare Worker, Clinical Researcher, and Personal Experience

As today is the anniversary of the passing of my best friend who came to the end of his battle with metastatic Colorectal Cancer (mCRC) on April 27 2023, I wanted to share reflection, insight and a personal and professional reminder about the importance of awareness, and action for patients at risk for and with Colorectal Cancer (CRC). This includes ongoing commitment to doing our part in securing safe and effective treatment options as well as providing holistic care for patients.

As I witnessed the journey with my friend, it brought back a big reminder for me of how patients' battles with such illnesses are profoundly influenced by a diverse group of individuals and their roles. This also emphasized that we would not be able to provide available treatment options for CRC, metastatic CRC(mCRC) and the many different subsets without everyone’s dedication and relentless commitment including Clinical Research and Clinical Practice roles within in-clinic/hospital and home nurses, nursing aides, and Hospice staff. We also would not be able to provide the support for the patients’ and their families’ physical, emotional, and palliative care needs that gives them the strength to fight on in their battle with cancer. In this article I will set the stage for the relevance of CRC and mCRC to describe the influences of key roles on patient experiences with their CRC or mCRC diagnosis, prognosis, and clinical course. Additionally, I will highlight the need for improvements in the adoption of updated screening guidelines and their need for public awareness. Finally, I will exemplify through my own personal experience with my friend and the journey through his battle with colorectal liver metastases (CRLM), the call to action to address the need for consistent diligence in the manner in which patients, their families or caregivers, and healthcare team members interact, communicate, and work together during their healthcare journey. ?This experience allowed me to see first-hand the need for this, especially since the trust and relationship between patients, families, caregivers, and the oncologist is influenced. Thus, the discussion below will explore this as well as the impact on patients holistically.

Setting the Stage

Colorectal Cancer has been at the forefront of cancers that may even be considered common given the frequencies (3rd most common cancer worldwide and the 2nd leading cause of worldwide cancer-related deaths).1 After a public figure, actor Chadwick Boseman, was taken from us in August 2020 from CRC, there seemed to have been a short-lived increase in awareness of CRC, risk of CRC, screening methods and the seemingly apparent uptick in public awareness did not result in increased screening.2'3

? Whether public awareness equates to increased action (CRC screening per current guidelines) is somewhat of a difficult measure to pinpoint given the lack of abundance of research on the matter. Also there are limitations in research on adherence to screening programs (i.e. potential overestimation of adherence figures due to the presumption of non-high-risk patients, the use of prospective studies with outdated data sets; e.g., from 2000 to 2016, the potential shift in standard screening practices due to the introduction of non-invasive methods, and the omission of factors such as insurance status and financial barriers).2'3'? Although there is published research indicating the positive effects of awareness about screening benefits, accurate assessments of these impacts are necessary. This could be achieved through extensive analysis of healthcare utilization and survey data at both national and local levels.?'?'?'?'? Since the screening guidelines recently changed, prompted partially by a rise in CRC incidence in younger adults at average-risk, there needs to be improved adherence to the guidelines which is difficult to assess for the reasons listed above.?'? ?There have been advancement of non-invasive screening technologies which are being preferred depending on if patients had prior colonoscopies and some studies show these likely would improve adherence to guidelines.? ?However, more study is needed to confirm this and the true impact of newer non-invasive technologies.?'1? ?It should be intuitive that public awareness improvements could ?lead to increased adherence to the updated guidelines and tools are readily available to use in addressing this.1?'11'12 ?Use of such tools should help improve public awareness so the call to action here is to make use of such tools and promote adherence as much as possible.

Personal Experience and Key Roles Influencing Patient Experiences

As an illustrative case, my friend underwent an initial colonoscopy on July 12, 2011 (age 35 at the time) due to symptoms that resulted in a diagnosis of iron deficiency anemia, during which a polyp was found to be positive for invasive carcinoma. Subsequent 2-year colonoscopies were negative for cancer until symptoms led to an Emergency Department visit at our local hospital in March 2020. On April 1, 2020, at the age of 44, which is below the then-recommended national screening age range of 50-75, a CT scan with contrast revealed two large liver tumors and multiple smaller lesions. A biopsy confirmed stage IV CRC as colorectal liver metastases (CRLM). Although the initial colonoscopy was performed out of medical necessity rather than as part of routine screening, it underscores the importance of screening in high-risk patients, especially those with a family history of the disease.? ?In my friend’s case he had maternal family history of CRC but was not aware until after diagnosis. This example demonstrates a case of a high-risk individual that developed CRC at a much younger age than the updated age of 45 years so the call to action here is for close attention to risk assessment by general practitioners as well as relevant specialists. Further following my friend’s clinical course, after consultations with an oncologist and a surgical oncologist and receiving genotyping results from the biopsy, he was informed about the diagnosis. However, during a hospital admission for complications related to CRLM and chemotherapy side effects, a resident informed my friend that the prognosis was more severe than initially indicated, emphasizing the importance of patient perspective and effective communication between healthcare providers, patients, and their families or caregivers. ?My friend and his family were quite distressed after this and became in doubt of other information they were being told. The physician providing the incorrect prognosis was a resident basing it on median overall survival from clinical trials published for patients fitting my friend’s diagnosis. My friend and family did discuss his prognosis further with the oncologist who explained his prognosis based on patient-specific data. ?In this example is another call to action where consistent diligence in how healthcare providers communicate with patients/families/caregivers must be a priority and participation as a care team member should include routine review of patient charts to have current accurate knowledge of patient status (Chart review, Imaging Report Review/Tumor board). ?Communicating prognostic information to patients is a core competency and skill that can be honed via available guidelines specific to such clinical and prognostic estimates.13'1?'1? ??Another communication issue my friend experienced had to do with his Tumor Evaluation via CT after several cycles of FOLFOX. ?The tumors were still unresectable and an offered option on the clinic’s website was not brought up (Yitrium-90 Radioembolization). The family brought up the option to the local oncologist and also contacted another institution to have all images and information reviewed to see if he was eligible for the Y90 treatment. It was only because of a family friend that had a direct connection to an interventional radiologist and surgeon that evaluation could be quickly done and communicated to the local oncology team. My friend was then evaluated further locally and began the treatment on Oct 1, 2020, which ultimately resulted in post-treatment downstaging/bridging to resection and surgery was the next step. Given the gaps in the patient/care team experience, my friend decided to get a referral to Memorial Sloan Kettering(MSK) to be able to have a qualified surgical oncologist from a well-known institution resect the liver, remove gall bladder, and place the Hepatic Arterial Infusion Pump.? It took multiple connections and referrals to be linked up to the right person at MSK, but he was successfully seen and treated. I even joined him several times for treatment and was glad to see such an organized team at MSK. For my friend’s case, he had a Hepatic Arterial Infusion pump (Chemo directly into the arterial supply of any existing or recurrent tumors) placed post-resection done at MSK for adjuvant hepatic arterial infusion. These further examples and call to action reinforce the need to ensure effective communication across care teams and patients/families/caregivers to ensure there are no delays in treatment that may pose risk for patients with advanced cancers. In this case, the incorrect prognostic information may have led to the delay or the team had not met with all key team members to make the treatment decision. ?Timing of Clinical Research and regulatory approval is also an important factor. Y90 Radioembolization was approved by the FDA for CRC on March 18, 2021 after clinical trials were completed and submitted. The Hepatic Arterial Infusion pump was approved by the FDA June 22, 2021. These 2 approvals exemplify the importance of everyone involved in Clinical Research to allow the Clinical Trials to be completed, regulatory agency submissions completed, and approved. Without the expertise of sponsors, CROs, investigators and site staff and participation of study patients, these treatments would not have been available for my friend. Also relevant is the experience of my friend through the process of starting treatment after diagnosis, understanding all the information on next steps, what specialists to set up appointments with, and manage the symptoms of having stage IV CRLM. My friend found that the support available did not meet his expectations.? Both my friend and I are nurses. In fact, we went to nursing school together, so we both know the oncology healthcare setting and it was still overwhelming with the volume of calls to make, appointments to get to, and prescriptions to fill.? At the beginning during the first rounds of chemo, he was still working as a nurse manager of an Emergency Department of a local hospital. After many rounds of chemo, enduring the side effects, pain, effects from the corticosteroids that go with chemotherapy his ability to effectively manage all of that quickly diminished. His wife is a teacher and also works and had to juggle work and taking her husband to appointments. Six months into chemotherapy my friend could no longer work and found it very difficult to navigate through managing appointments and keep up with all the information coming to him during the course of treatment.? He was faced with appointments, follow up CT and FDG-PET scans, blood work, chemo side effects and he found himself relying more on his wife who also was struggling to keep up with everything. It was difficult for him to understand next steps and what specialist to schedule and when, i.e. Oncologist, Surgeon, Chemo visits for infusions, visits to 3 different cancer treatment facilities in NYC, Rochester, NY, and Syracuse, NY for the Hepatic Arterial Infusion Pump. Visits to any doctor’s offices were stressful given the lack of support for navigating around the process, providing guidance, or having a resource for questions at the beginning. MSK had a “Nurse Navigator”.? This is a designated role within well-organized and staffed oncology centers, where a Nurse or Nurse Practitioner serves to guide the patient and family through the process by walking them through the treatment plan and next steps post chemotherapy after each assessment of the tumors (i.e. CT, FDG-PET). This role also serves as a dedicated support for questions regarding their care/treatment plan and guidance for planning appointments, thus addressing the call to action for key roles in patient care/treatment or Clinical trials as protocol visits and sequence of procedures could be complex. Clinical trial patients may be guided by a study-specific resource (i.e. study coordinator or study nurse). ?Gaps in physician-patient communication can easily be avoided by planning for adequate time for visits and explanation in terms the patients/families/caregivers can understand. For example after explanations of prognosis, treatment progress, next steps, etc, ask if they understand all that was explained and encourage questions; ask if any medical terms were not understood and explain them. Ensuring that a Nurse Navigator or similar resource is available early on after diagnosis can also avoid these gaps. ?Although resourcing barriers exist that may prevent immediate provision of such roles for patients and families, the health care and/or research team must take the need into consideration and provide patients with guidance and communication paths to the care team. The impact on patient’s emotional well-being of how these topics are communicated can significantly affect patients, thus proper prognostic disclosure and any treatment and tumor status related communication must be done in an effective manner which can be a formidable task depending on the true prognosis and if it is negative.13'1?'1?'1?

Although my friend lost his battle with mCRC on April 27, 2023, the journey he endured had a positive impact on our local community and on patients across the USA due to his advocacy that was driven by his experience and kind, nurturing and healing nature. My friend had started a podcast to support other patients that were going through the same path of cancer diagnosis and treatment and were in need of support. ?

My friend fought through all the chemo, surgery, side effects, and pain while still serving as an advocate for patients with CRC and mCRC while he could. His legacy remains and is carried on by the term “Never Surrender” which I practice in the Clinical Research Industry to do my best no matter what adversity is faced, to ensure Clinical Trials are compliantly conducted and leading to regulatory approval of new, safe and effective treatments for patients that need them. Our local news did a nice job with showing our community just how impactful he was for cancer patients which really shows how important having support is.? The links below are 2 different news stories about his journey and giving back to the community and anyone who needs support with cancer. He has run podcasts and fundraisers to give back to others and is a true example of a selfless Nurse.? He is missed for sure but lives on in his legacy of courage and support. ?

In summary, the highlights and calls to action in this article hopefully serve as a reminder that all roles in Clinical Research and Clinical Practice have a significant impact on CRC and CRLM treatment options as well as the patients holistic well-being to drive the hope and strength patients with advance cancer need to get through the journey. ?It is my hope that this article will boost motivation to continuously push the frontiers of advancement in treatments for CRC and ensure that patients and their families/caregivers have the support needed for effective interaction with their healthcare and/or clinical research team members throughout their healthcare journey.

https://www.youtube.com/watch?v=03ymS1ga5Ns

https://www.rochesterfirst.com/news/business/rochester-man-battling-colon-cancer-starts-fundraiser-to-give-back-to-others/

https://www.youtube.com/watch?v=ctX2QCtOtQk

References

1.???? World Health Organization(WHO), Newsroom Fact Sheets, Colorectal Cancer available from www.who.int/news-room/fact-sheets/detail/colorectal-cancer, 11 Jul 2023,

2.???? Aaron Kahlam, Salil Chowdhury, Jasneel Kahlam, Kamal Amer, and Sushil Ahlawat, The Boseman Effect: A Missed Opportunity?, Cureus. 2022 May; 14(5): e24959.

3.???? Amenah A. Agunwamba, Xuan Zhu, Jenny St. Sauver, Gina Thompson, Leah Helmueller, Lila J. Finney Rutten, Barriers and facilitators of colorectal cancer screening using the 5As framework: A systematic review of US studies, Preventive Medicine Reports, Volume 35, October 2023, 102353.

4.???? Deborah A. Fisher, MD, Nicole Princic, MS,, Lesley-Ann Miller-Wilson, PhD, et al., Utilization of a Colorectal Cancer Screening Test Among Individuals With Average Risk, Original Investigation Oncology, September 2, 2021. JAMA Netw Open. 2021;4(9):e2122269. doi:10.1001/jamanetworkopen.2021.22269.

5.???? Cesare Hassan, Michal F. Kaminski, Alessandro Repici, Screening and Surveillance in Your Practice, Gastroenterology, July 02, 2018DOI:https://doi.org/10.1053/j.gastro.2018.06.051.

6.???? Morgan E,? Arnold M, Gini A, Lorenzoni V, Cabasag CJ,? Laversanne M, Vignat J, Ferlay J, Murphy N, Bray F, Global burden of colorectal cancer in 2020 and 2040: incidence and mortality estimates from GLOBOCAN, Gut, 08 Sep 2022, 72(2):338-344.

7.???? Stacey A. Fedewa, PhD,? Jessica Star, MA, MPH,? Priti Bandi, PhD, et al, Changes in Cancer Screening in the US During the COVID-19 Pandemic, JAMA Netw Open. 2022;5(6):e2215490. doi:10.1001/jamanetworkopen.2022.15490.

8.???? Henrik Kowalkowski, George Austin, Yinglong Guo, Lesley-Ann Miller-Wilson, and Stacey DaCosta Byfielda, Patterns of colorectal cancer screening and adherence rates among an average-risk population enrolled in a national health insurance provider during 2009–2018 in the United States, Prev Med Rep. 2023 Dec; 36: 102497. doi:?10.1016/j.pmedr.2023.102497

9.???? Shivan J. Mehta, MD, MBA, MSHP, Arden M. Morris, MD, MPH, and Sonia S. Kupfer, MD, Colorectal Cancer Screening Starting at Age 45 Years—Ensuring Benefits Are Realized by All, JAMA Netw Open. 2021 May 3; 4(5): e2112593. doi: 10.1001/jamanetworkopen.2021.12593.

10.? Aasma Shaukat, MD, MPH, FACG, Charles J. Kahi, MD, MSc, FACG, Carol A. Burke, MD, FACG, Linda Rabeneck, MD, MPH, MACG, Bryan G. Sauer, MD, MSc, FACG (GRADE Methodologist), and Douglas K. Rex, MD, MACG, ACG Clinical Guidelines: Colorectal Cancer Screening 2021, The American Journal of Gastroenterology 116(3):p 458-479, March 2021. | DOI: 10.14309/ajg.0000000000001122

11.? Elvira D’Andrea, Dennis J. Ahnen,? Daniel A. Sussman,? and Mehdi Najafzadeh, Quantifying the impact of adherence to screening strategies on colorectal cancer incidence and mortality, Cancer Med. 2020 Jan; 9(2): 824–836. doi: 10.1002/cam4.2735.

12.? American College of Gastroenterology(AGA), CRC Community Education Toolkit, From Website, https://gi.org/education/educating-you-your-colleagues/colorectal-cancer-awareness-education-resources/crc-community-education-toolkit/

13.? Andrea C. Enzinger, Baohui Zhang, Deborah Schrag, and Holly G. Prigerson, Outcomes of Prognostic Disclosure: Associations With Prognostic Understanding, Distress, and Relationship With Physician Among Patients With Advanced Cancer, Journal of Clinical Oncology, Volume 33 number 32, 10 Nov 2015.

14.? Walter F. Baile, Giving Bad News, Oncologist. 2015 Aug; 20(8): 852–853., 16 Jul 2015, doi: 10.1634/theoncologist.2015-0250.

15.? Bloom JR, Marshall DC, Rodriguez-Russo C, Martin E, Jones JA, Dharmarajan KV. Prognostic disclosure in oncology - current communication models: a scoping review. BMJ Support Palliat Care. 2022 Jun;12(2):167-177. doi: 10.1136/bmjspcare-2021-003313.

16.? Safa Elkefi, MSc, and Onur Asan, PhD, The Impact of Patient-Centered Care on Cancer Patients’ QOC, Self-Efficacy, and Trust Towards Doctors: Analysis of a National Survey, Journal of Patient Experience, Volume 10, January-December 2023

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